I first reported a rash on my arms to my local GP surgery 2 and a half years before I was finally diagnosed with Stage 4 Hodgkin's Lymphoma. I was told over and over again that it was eczema or that I was allergic to sunlight! Even the dermatologist didn't pick it up! Eventually I developed lumps on my legs called Erythema Nodosum, which prompted a chest X-ray. The results of the chest X-ray revealed a shadow on my lungs. The CT scan revealed enlarged lymph nodes in my chest and neck, the biopsy revealed Hodgkin's Lymphoma and the PET scan revealed that I was Stage 4 and that the cancer had spread to the edge of my lungs!! I had 6 months left to live before I started chemotherapy, and I'm just coming to the end of my treatment. Thank you for sharing your story. It's shocking how these things are not picked up soon enough. We need more stories like this to bring about positive change.
I hope you will recover from this Rachel. Im feeling all of the symptoms but dont have the capability to consult a doctor. I will be praying for your fast recovery
My two young sisters past of skin cancer and the other ovarian cancer. My father past of colon cancer and my mother had breast cancer but died of a broken heart. I have monoclonal gamapathy pre-cancer and my wife has multiple myeloma. There is something seriously wrong in our societies! We all know what the problems are but its easier to focus on saving the planet by changing from plastic straws to paper straws. My deapest prayers to everyone here who suffers and has to fight.
It’s taken me 5 years to finally get my diagnose. I tried to tell them, the Doctors. Over and over. I finally had a bronchoscopy and biopsy. And I was right. Cancer. It’s now spread to my sinus and brain. I just sent my doctor an email saying, I told you. 😞
That’s a horrible situation they’ve thrust you into. No consequences for them, you bear their passive aggressive attitude results. I am so very sorry you had to go through that long, gaslighting experience. 🙏❤️🙏For you.💔💔💔💔
I'm so GLAD that you finally got answers! My husband was first diagnosed with Follicular Lymphoma when he was 55 years old. He had a lump just in front of his right ear. The dr performed surgery and as soon as he opened his face up he saw that it was cancer. So they did a biopsy of what they removed at he was told it was Follicular Lymphoma. They did a full body scan and said at that time they were just going to wait and see because they didn't want to start cancer treatment until it started to be aggressive. In no time it had changed to aggressive B-cell and told him he had to have treatment right away. His treatment was "CHOP". He had to be hospitalized because the treatment was so brutal. They also wanted him to have a stem cell transplant. He said no. My husband survived the treatment and was told he was in remission. Now my husband is 78 years old and 3 years ago he was diagnosed with F. L. again. And they told him he probably had it for at least 3 years. His symptoms started out as an annoying cough that wasn't productive at all. He was in the middle of changing doctors so here in America you go to Urgent care and are seen by whatever doctor is on duty at the time. They kept diagnosing him with pneumonia and would give him meds and he would go home. After the 4th time of going to Urgent Care, I went with him and told the doctor that he doesn't have pneumonia which is what he tried to tell us he had...again. I said he needs to see a specialist, something is wrong! The doctor said, well an Urgent Care doctor really doesn't have any pull with specialists. I said please try! So he stood there and typed a note to a pulmonologist. My husband was finally contacted by a Pulmonologist's office and an appointment was made. As soon as he pulled up his xrays he said no, he's never had pneumonia. He said I bet your Follicular Lymphoma is back. He had 2 large tumors right behind his esophagus and had closed off his right lung. My husband was NEVER told that there isn't really a cure for FL and that you will have to keep going back for "maintenance" when the cancer starts to grow again. His treatment was Retuximab and Revlimid for the last 3 years. He is finished with his treatment and is doing great. We have to trust ourselves and realize that we know our bodies. When something feels wrong we have to be insistent with these doctors. !
I had a swollen lymph node on my inner thigh. Was told as we got older we got bumps. After a year I went to another doctor who did biopsy and found my Follicular Lymphoma which like yours, was a watch and see. Also turned into B Lymphoma with same R Chop like him. Mine is also back after 4 years on my spleen. I also have had to be more forceful then I have ever been in my life!! On my 6 mo checkups prior my oncologist never laid a single finger on my body. Just the same questions every visit. Luckily I had a CT scan on my 6 mo visit. I have lost so much respect for all Dr.
@@pattylyman7907 we feel the same about drs. My husband developed an infection in his lungs and he said its just a virus. Well, I talked to our primary dr and said I wasn't accepting that diagnosis..viruses don't last over a year. She sent us to a Pulmonologist and he did a biopsy and found it was a bacterial infection that you get from Retuximab. A bacteria that he will never fully get rid. The bacteria is encapsulated so its difficult for the antibiotic to fully clear the infection. I don't have a problem with telling these drs what I think, but they have pushed us to that point. I will be praying for you.
I could really relate with your story. I have NonHodgkin Lymphoma, Mantle Cell, which was diagnosed in 2015. Our medical care in the States has become a nightmare. I’m mostly ignored by my GP and Rheumatologist. My cancer isn’t curable and now I am 71 years old. I see the difference in how I’m treated. Each doctor wants to send me to a specialist for every little problem. I have become a different person. I will see my oncologist in a couple of weeks and am expecting another CT scan. I pray you have a long life and can beat this insidious disease. It’s a journey and it’s not easy. 😊🙏🌸
@@teamtrioauto5474 yes mantle cell is definitely treatable- it affects the large B-cell, which is also treatable. That was what I had, stage 2. Under my sternum, wrapped around my neck, beyond coughing: suffocation by strangulation from my masses. I have been clear for 13 years now.
Lisa, thank you for sharing your experience here. If you'd like to share more, please feel free to reach out to our team: alexis@thepatientstory.com. Thank you.
My mum was misdiagnosed for years too, doctors giving her pills, eye drops, test after test only to tell her that there was nothing wrong with her..... 6 weeks later after getting a second opinion from a different doctor she was given 6 months to live because they found she had pancreatic cancer. She died exactly 6 months later Christmas night. NEVER stop looking for opnions, listen to your body and don't take no for an answer until you get to the root cause. You must advocate for yourself, you have everything to lose. I'm so happy for Leanne that she finally got her diagnosis and treatment and that her recovery will be flawless with a very long and healthy life ahead of her.
I can relate to this - I have had worrisome symptoms similar to that of pancreatic disease...but no CT scan has ever been ordered...just ultraound which didn't show the pancreas clearly..so I'm told that nothing showed up. So, what do you do! Just wait until things get worse...yes...in Canada that is what is happening. You can't see your doctor for more than one symptom, so, which symptom do you pick? It is so sad, and very dangerous...
The problem is people shouldn't have to get opinion after opinion. Doctors should just do their job. Fatigue is one of the biggest symptoms in blood disorders and along with an enlarged spleen should have rung alarm bells. I am a Registered Nurse and knew this so why could they not pick it up. It is not as though she had some rare one in a million disease. Doctors are too flippant and dismissive.
@annekennedy8127 I am Canadian and have had horrible symptoms for 2.5 years now and I stopped going to my Dr. because there are too many symptoms and he only allows me to address one.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
@@annekennedy8127 - NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
@@a.rosesrbleu9580 can you please read what I typed above I don’t know how to spell or punctuate and I don’t know anything about any of this this can you please see what I typed and what to do?
My mother was totally dismissed by her doctor over and over. He told her that her symptoms were menopause. She deteriorated over a year or so. pain sent her too emergency. It was a young intern who gave her an ultrasound and found advanced lymphoma. Get second opinions until you are satisfied
@@heatherjackson2520you are so not alone 🎉. I'm going on year 3 and right there with you trying to make my way through this minefield of medical "care" for post menopause women. Unfortunately ageism sexism and dismissiveness are the norm.
This makes me so tearful. Thank you for sharing your story. My father recently passed from Stage 4 cancer. He had been going to doctor after doctor and it was not detected.
I had the coughing for a couple of years. I stopped eating in front of anyone because I’d start coughing and it was embarrassing. I finally had a MRI because of tailbone pain, and it showed Leukemia. It’s so easy to rationalize away symptoms. Hope you’re doing well.🌸
😳😳😳 OH MY GOD !!! I HAVE BEEN EXPERIENCING THE TAILBONE PAIN for 5 months along with the 2.6 years of coughing, flank pain, inguinal pain from HUGE Lymph nodes, neck completely immobile from rock hard muscles and ENLARGED LYMPH NODES, not able to sit AT ALL because my legs go numb and have EXTREME PAIN in thighs, knees, calves, feet. Then unable to stand up after 10 minutes of sitting because hip pain. Cannot lay on back with phone as my arms go numb and start ACHING with shooting pain to my forearms, hands and fingers. What imaging study should I request for the tailbone pain/coughing and what SPECIALIST should I seek for treatment if there is such a thing ? 💜🙏🤗 I hope you are in a treatment plan and are surrounded by loving compassionate supportive people. 🙏 🧡
I have tailbone pain. I went to my dr about it. Doubt they even put it in my medical notes for that day. Still have the problem on and off. Don't know how to get them to listen to me. Have also complained about how my arms hurt when I put them up over my head.
Very articulate well spoken thank you Leanne. Im so sorry to hear how difficult for you to finally be diagnosed. I’m so glad the GP was empathetic and apologized I believe you taught him more then medical school textbooks could ever had.
The medical student or intern who was so pivotal in getting you correctly diagnosed is a fine example of someone who sees the whole patient, researches their history and findings and then hypotheses possible diagnoses. She saved your life and will go on to help so many others. I’m so glad she was there when you desperately needed her!
Wow! Identical stories here! Mine took 6 years to diagnose...lymphoma and metastatic cervical cancer...stage 4 ,but could have been prevented. I was told I was working too hard .which cause intense pain and I had " allergies" ..nope I had the coughing for several years too..
Your story is almost identical to mine. I only wish my gp had given me an apology instead of medically gaslighting me. So glad the other Dr was able to connect the dots and help you get an answer. Sending love!
You can report their gaslighting to the American board of medical examiners. Your doing so could save another person from going through your hat you experienced and maybe save someone's life. Doctors get alot more cautious when patients report their behavior it is taken very seriously.
My husband ran across this story and it just really really hit home for things I have been going through the last 3 yrs. He showed it to me, reluctantly, because he didn’t want to scare me. There are SO many similarities. But I told him, I don’t *think* I have cancer. But if I do, at least there will be an explanation. So it doesn’t scare me. It does the opposite. It’s giving me the courage to keep on searching for answers and not just accept the unknown. So thanks so much for sharing this story. I do hope I can find some answers. I am so tired of fighting an invisible monster. Thank you 🙏🏼 And for this beautiful woman, I am so glad you are still here for your family. 🙏🏼🙏🏼🙏🏼
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
@heatherjackson2520 if youre in the U.S., try to find a nurse navigator. Many cancer associations have hotlines that offer assistance, especially lymphoma societies.
I'm so sorry you had to go through such a horrible experience to finally be heard. Sadly I feel that once we (especially women) hit a certain age, we somehow become invisible to doctors. It's as though we no longer really matter. I'm in Canada and it's the very same here. We have to be insistent and determined when we know something is wrong. It makes me want to scream "I'm 61, I'm not dead!". Much love sent your way. ❤️
Agreed. As much crap as American healthcare gets, it's largely undeserved. I'm American, but was born abroad and lived abroad as an adult. I can state for an absolute fact, many other "advanced" countries are more worried about treating the symptom and getting you out the door than finding out what is actually wrong. Canada is simply "suffer and wait" healthcare. That might offend some people, but they 1: don't know what they are talking about or 2: have some fetishized ideals about socialized healthcare. I was on a medical clinic board right near the Canadian border in Alaska for years. I can't tell you how many patients were Canadian who came over the border to pay out of pocket for routine things that would have them waiting weeks / months: tooth abscesses, unable to get dentures (you know, so you can eat), infections, etc - to very serious illnesses.
In USA my daughter was told last year during a week long hospital stay at UCSF. That she has lymphoma. It’s been a year and they’ve still done nothing for her, no treatment nothing. We fight daily with the system here but have not given up. Praying for the one good Doctor To help her.
Please push the squeaky wheel gets the oil. Where do you live? Here we can get a patient advocate with the insurance, politicians can be pushed to give assistance also. If you're in thr USA I might could help..??
Leanne, I'm so sorry you went through all of that but happy you are here to tell your story. Your story sounds very similar to my story but I'd already had a prior cancer dx with a different lymphoma 7 years before that. I KNEW there was something serious wrong with me because I'm a nurse and know my body extremely well. I was frustrated that I had to go through all the night sweats, relentless itching face and neck etc and exhaustion, horrible coughing, and brutal and worsening back pain and unable to sleep etc. My daughters, thankfully, called an ambulance for me due to the incredible pain I was suffering and wasn't sleeping because of the pain. After the ER visit, I was admitted and I had surgeries and so forth. It was a whirlwind of appointments and seeing an oncologist out of town, which was a challenge. After 8 R-CHOP tx, 2.5 years of chemo/cancer tx, I felt much better except for the long term side effects I will have to live with. I know I'll never be the same, but want to live until all my kids to get married and have their families, anyway. Message for everyone: TRUST YOUR GUT FEELINGS and DON'T GIVE UP! (especially if all tests haven't been done and/or you truly feel there's something very wrong!) Leanne, as you said in your video, "Advocate for yourself!" ❤
Thank you for this, I’m sick all the time, same things, finally got a referral to a Hemo/Oncologist this month! Thanks for the help! God bless you, praying for you
If it weren't for the fact that I am a receptionist at an Oncology/Hematology Department working w/ Chemo patients, I would've never known how serious this all is that's going on w/ me. DVT in a 27 yr old is, um, unheard of unless you're in your 60s🥴
I just saw this video and just found swollen lymph nodes in my body that I didn't notice before due to weight gain. My partner now can see the one protruding out the side of my neck and we can't unsee it! I have had severe fatigue and a lot of other issues. This has really opened my eyes and I need to take my health seriously and advocate for myself at the doctors.
Three years ago I had a lump on the side of my neck and the doctor I was seeing at the time said it was a goitre..looking back now I can't believe I just trusted her.. Anyway I left it untested for a good couple of years and then one day someone said to me you should go get that checked.. It wasn't bothering me or anything like that but it was still a lump and lumps get checked. So I did. And one test after another it turned out to be some form of lymphoma but wasn't cancerous. A lovely doctor by the name of Dr Slaughter cut my throat and removed it. I couldn't make this up...that was his name. I probably shouldn't say he cut my throat...he removed the lump. Then I went in for bloods and check ups every 3months then 6months then a year and still nothing has progressed. I guess I'm telling you this that sometimes finding a lump doesn't always mean the worse. I sincerely hope everything is going well for you. Its the scariest time of ones life...and im sorry u are going thru this. x
That’s the same place I could clearly see mine 2 years ago then the dr found 4 enlarged. Had CT scan they said everything is fine . Well the nodes are still protruding? I’m confused. I will show her again next month . Good luck to you . ❤
Well it turns out I have thyroid cancer, spread to my lymph nodes! :( I am going for a FNA on my thyroid nodule tomorrow. I don’t know much other than it is very likely cancer (the microcalcifications found in my thyroid nodule are also present in the lymph nodes) and given my family history I have no doubt it is. I am so grateful for this video I think it may have saved my life, hopefully anyway.
You’re so brave to share your story, thank you so much. Listening to you could be my own story I’ve been going through the last 2 years. My GP decided to “retire” as soon as Covid hit and my symptoms basically were ignored for all this time since. I have lupus as well, so docs like to blame all my newer or different symptoms on lupus. Like you said, you knew it was different, I do too. I’ve been waiting for a CT on my lungs for 5 months! In Canada we don’t pay to have tests..instead we wait..and wait. God Bless
You're right, doctors tend to blame for everything if you have already a disease diagnosed. I hate that! How are you? I have lymph nodes enlarged in the neck and chills,sweat, my neck is swollen..😢
I hate that, I have Lupus and it becomes a catch all for any new symptoms. You know hoe hard it was to even get your diagnosis so you know getting anyone to believe you is difficult. Don't take that as an answer
Leanne you are such a brave woman. We had similar problems with my dad’s care and unfortunately he ended up passing away from his cancer. We nursed dad at home and one day the doctor who gave my dad antibiotics for months without seeing him during covid came to our home and my sister stood with him beside my dad who by this time was unconscious and made him apologise. I am crying here as i type this. You sometimes wonder how they become doctors.
My PCP is overbooked, eyes stuck on his computer, fails to reply to anything I say, office staff all start a the front desk and are "promoted" to MEDICAL ASSISTANTS🙄 Mrs. MD works in the office, handling billing and very unfriendly. Lab results are never reported to the patient, unless by chance at a pending office appointment, or you call. This type of practice didn't exist decades ago, now it's common place. How many patients are falling through the cracks with missed signs of serious illness? Since the pandemic, things have only gotten worse. I'm truly unhappy, but fear that finding another MD will not make a difference.
My daughter. Was diagnosed with non.hodkins lymphoma aged 26 right out of the blue after tonsillitis for the 5 time in 8 moths .... then breathless. Diagnosed in a and e there and then. Massive shock ...didn't go home for 3 moths from that day . Only after an x ray by an astute doctor .. only to find a large mass in her chest.... after 6 rounds of chemo 3 years down the line now. Still all good . Lymphoma notoriously difficult to diagnose. Big hugs. And very much found your explanation very interesting. Thanks. And hope you keeping well. 🤗
Oh my goodness it was like listening to my own story which is happening right now...I was told over the phone by my GP what I had.I was on my own when she told me..I was so angry with her so very unprofessional and no compassion what so ever. I've just had the biopsy and now waiting for the results my journey is now continuing so what is next. I have the love and support of my family, friends and my beloved animals unconditional love all the way.
Leanne ....God bless you for your courage and inspirational story. Thank you for your grace and for forgiving the medical staff. Wow what a beautiful lady. Xx
Prayers for you! Cant get over how 100% our stories are alike!. I had stage 4 cervical spread to lympnodes im 42. It was misdiagnosed as everything even by a cancer center in my hometown (scary) went 2hrs away to Atlantas Emory they found it in 3min after a CT 🤦♀️ ive now done treatment for over a year got rid of most of it🎉 but found out last night (again after being told i had a uti) that its back and in my liver. Cancer is no fun. Prayers to you!!! ❤
Jennifer, I am so sorry to hear of your struggles. I am about two hours from Emory myself. I am originally from Atlanta. Where I am the ER is like an Urgent Care and I know about the cancer centers where I am because they have been searching for my daughter's cause of her illness for years. You are in good hands with Emory. God bless you and may all be well with you.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
It took over 3 years to get a diagnosis for me. The last 3 months were just rediculous. Physically I was going down hill. I would try to eat and it felt like I was trying to swallow gravel. I went from 170 pounds to just over 100 pounds in 3 weeks. I was told to eat more. The huge lymph under my right arm, the lumps in my throat, and the scan showing something growing on my liver should have been enough to send me to a specialist. I called the ambulance for myself. After a torturous time in the local ER I was sent to the big city. I was done I did not care to live any longer. I was just 100 pounds. They weighed on the gurney. I could not stand. Aggressive Large B Cell Lymphoma. Finally. Something. There is so much more of my story and it would take up pages to tell it all.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
I'm in Aus and thank you for sharing!! I'm not getting a firm diagnosis. Menopause. Yep. ESR high, CRP low. Continuing to find answers. Your story has been helpful. ❤
You are an amazing woman! Know that you CAN make it through anything. Look at what you have already made it through!!! You provide inspiration for all women to realize that we are stronger than we think.
Your story is exactly like my story. I’m still having chemo so we’ll see what the end results will eventually be! Thank you so much for sharing and God bless!
Here in the US, they suck too. About 15 teen years ago. I became very sick and went to my doctor he ran some tests and said he didn't know. I went home, then one month later. I was hospitalized for weight loss of 73 pounds . At the hospital I was told I was a hypochondriac and that they couldn't find anything wrong. 2 years to the day I was hospitalized again with over 100 lb weight loss and teetering on the edge a life-and-death. I was transferred to another hospital where they had a Disease and Control doctor available. When he walked into my room he told us that he believes I have a disease called lupus and that he would be running the test to show that lupus is what I have. 2 Days Later after a four-year battle with doctors telling me it was in my head that I was actually diagnosed with a disease called lupus. Lupus is an autoimmune deficiency disorder where your body fights itself it considers your body of foreign object. There is no cure for Lupus.
Oh my. I'm sorry to hear that 😔 I hope you are as comfortable as you can be. Sometimes the medical profession fail miserably. You deserved so much better than that.
Shellie, I am so sorry about what you are going through. There is a doctor named Dr. Brooke Goldner who had lupus beginning when she was a teenager. She became a doctor and healed herself, and now she helps others with chronic illnesses, not only lupus but other autoimmune diseases as well. I wish you all the best.
@@kathleenmaloney915 Lupus is one of over 80 different autoimmune diseases. None are curable. I have PsA and am now being screened for lupus. I am also having a second CT scan for possible lung cancer. So many symptoms overlap--loss of appetite, weight loss, fatigue, shortness of breath, almost daily low-grade fevers, and more recently a nighttime cough. Fortunately, ever since my PsA diagnosis (which took 3 years to get), I have assembled a wonderful team of specialists. But that was after firing my primary care doctor, a neurologist, dermatologist, and rheumatologist who were not listening to my concerns or would refer me to someone else.
@@jodybogdanovich4333 A lot of bad doctors. You may want to ask to be tested for Sjogren's. Before I wa diagnosed, I was told that I had emphysema. CT can showed inflammation and scarring of the lungs due to ILD. I did not believe that I had it. Saw two different pulmonary specialists--both said autoimmune diseases do not cause lung scarring. Sjogren's and Sarcoidosis are two that definitely do.
Advocate advocate advocate for yourself. Absolutely! I had a similar experience starting at age 35, and that doctor told me it was all in my head. Fast forward two years they find a small lump near my breast. By this time I was suffering from pneumonia and bronchitis constantly. They sent me to see a therapist and the therapist told me unless it was something organically wrong with me I would never get well. I asked a friend what that meant and she says that means if you don't have something like cancer. I took my mammogram imaging and I ran to the cancer center looking for a second opinion.. within a few hours they knew immediately that I was facing either Non-Hodgkin's lymphoma or AML. I had weeks to live, it was everywhere but the liver. I ended up getting treated for Non-Hodgkin's lymphoma, and in ten months I was in remission and still am. The Doctor who told me it was all in my head , ran off and never returned to his office. No apology, nothing. Sadly about 6 years later my brother passed away from the same cancer. I'm resilient, and that helps fighting a horrible disease. 26 years later the chemo is aging my heart, kidneys, lungs and I have 3 autoimmune diseases. If I had to do it all over again I would. Advocate advocate advocate for yourself, no one else will.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
It makes me so angry when I hear the dismissal that patients get from doctors. My 18-year-old daughter has been diagnosed with stage 4 Hodgkins and had all the symptoms since 15. She was told the reason she was fatigued was that at 15, they felt she was chubby and needed exercise. The itching also could be a cause of dietary issues. Took her again because she had swollen lymph nodes that hadn't gone away for over six months and were told these can take time but they congratulated her on her weight loss. She had night sweats and was experiencing nausea and vomiting. Then she started having horrible pains in her hip. Finally, at 18 she found a doctor who sent her for a scan and was set up for a biopsy. She had numerous lesions in her neck and sternum and also the pain she felt in her hip was cancer that had reached the muscle but not the bone. I was so mad at the medical professionals who dismissed her but I was even madder at myself for listening to their nonsense. My daughter has been cancer free for 2 years now. All through her treatment she was the strongest person. I could have never endured half of what she went through. Yes, there are good doctors but It's so wrong to be ignored. I'm glad they finally listened to you.
I remember when I was 12 or 13 and my mom took me to a dr for all these symptoms I had been having and the doctor told her "sometimes teen girls make things up for attention" to explain away my complaints of feeling tired, depressed, in pain, and generally unwell. I also had jaundice, chronic constipation and weight gain despite having been in track in school till that point. They still managed to ignore and dismiss all that somehow, even though those were observable symptoms I couldn't make up.
I'm having the same symptoms as your daughter and I can't get anywhere with the doctors. They tell me I'm depressed and want to refer me to mental health services! An mri would solve so many questions but they refuse.
leeanne i am so glad you told your story, and delivered it so professionally, i've been having ongoing issues too, you give me courage to search for answers. They forget they're working for us, we pay them, they don't pay us, but they make you feel like you're holding them up alright.
It is very rare to find a good doctor these days. I had balance issues, falling over, headaches and I went to five different doctors, emergency room and a specialist and was told to lose a couple of kilos, it was psychological and everything in between. I told them I thought I had a brain tumour and asked for an MRI. I was fobbed off every single time. It took nine months to get that MRI only because I refused to leave the hospital without one. I was then diagnosed in a few hours but the damage had been done. I put in a complaint to the Medical authorities and was told in writing "we don't like to punish doctors". So the patient has no hope. We shouldn't have to be going for second, third and fourth opinions at our expense. Doctors should just do their job and not think they are God's gift to the human body. I was a Registered Nurse in theatre and I have no faith in the medical profession. I have seen in all.
You contacted the wrong place if you want to be taken seriously tell the doctors that ignored you that they were wrong, imply you're going to sue, put a little fear in them so they will listen to the next patient more closely. You may just save someone's life.
Someone should begin an online pétition about how doctors don't take us seriously, etc. It's happening everywhere so much. They misdiagnosed me for years despite my positive labs that ignored me. I have lymph nodes enlarged in the neck, I have sweat, pain, swollen neck, it's extremely painful. And gotten worse. But I'm scared of doctors because of their behavior. 😢 I'm so tired of this.
It’s good they apologised but they have no right to be dismissive in the first place. It is so frustrating and distressing to have to fight to be heard when you are already in such bad health, it makes you so much worse and more ill. Doctors need to start being held accountable especially for the people they accuse of being a hypochondriac when they are literally on the verge of death and trying to get help. I don’t see how this isn’t getting better or why it’s even still happening in this day and age.
I agree with you. But sadly that doctors don't take the patients seriously is so common now. It's always being struggling to be heard or taken seriously. Seems they want to probe there's nothing wrong.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
Leanne, thank you very much for sharing your story. I admire your resilience and determination to advocate for your own health. Your story is a reminder to all of us of the importance of self-advocacy in healthcare. I hope this serves as an inspiration to others who may be going through similar experiences. As a future physician, watching stories like yours, is a powerful reminder for me to take the time and actively listen to my patients. I commend your courage in confronting the doctor who initially dismissed your symptoms. It is unfortunate that it took so long for you to receive a diagnosis, but I am glad to hear that a general practitioner trainee was able to look at your symptoms holistically and provide the correct diagnosis. Unfortunately, this experience is all too common and it’s disheartening. Doctors are human and can make mistakes, but they must practice open communication and establish trust with their patients. That is why it is essential that healthcare providers must take a holistic approach to patient care and remind themselves of the ethical principles of healthcare, especially ‘nonmaleficence’ (“to do no harm”); in your case and to many others with similar experiences, to do nothing is harming. Again, thank you for sharing your story and raising awareness about the importance of advocacy. I wish you all the best in your continued journey and I hope you are provided with resources toward recovery.
I wish you success as a doctor, think about these stories and even if it turns out one patient is just a complainer or another is drug seeking not everyone falls into those categories because it's a person you're looking at not a category or a number. Think of every patient as your mother, father, brother, sister or grandparents and think how would I take care of those I love so much? Then think this person in front of me is someone else's,mother or father or sibling, treat them all well. Don't get jaded by an awful system that makes medical decisions with a calculator and no education. Advocate.
I was diagnosed with lymphoma in my spleen yesterday. I was also not getting the proper care from my Doctor's and several emergency room visits. Finally a Doctor who actually cared, dug deeper and put all the pieces together. I'm mad so many Doctors basically blew me off but, morbid or not, am happy to finally find what's wrong with me.
Praying for you that chemo therapy is successful for you! I had non Hodgkin’s lymphoma stage IV in 1980 had CHOP chemo therapy and I’m 62 now! Unfortunately I was diagnosed with Cholangiocarcinoma April 10, 2023 not related to lymphoma! Prognosis isn’t good they couldn’t get all the margins! I am going to do radiation therapy and start an oral chemo post radiation to slow the progression and give me more quality time hopefully with my family! Praying for you the treatment for lymphoma is very promising God bless you 🙏
I know how you feel. Just went through a year of bad advise and misdiagnoses Still going through so much and still don't know what's wrong. Thanks for your video.
All these symptoms are exactly the same as the autoimmune disease Sarcoidosis. I have this. By needle biopsy of my enlarged lymph node the result came back as lymphoma. It has happened before. Eventually I had a surgical biopsy of the lymph node and the results were Sarcoidosis.
You are your own best advocate. Sadly it may come when we are at are weakest but don't give up. Wonderful that you will now continue your journey with your family and friends, peace and health. I had a few Dr's who were upset with me when I brought my journal with my symptoms and questions , as my memory was being affected by the extreme fatigue but I also have a team of gems.
OMG your so amazing. So sorry for what you have been through and are going through. Praying your strength will see you through this and for the best of health for the future
Your situation is not unusual in terms of doctor indifference and them being rushed. I had a PCP tell me to look toward the East every morning to assuage my grief of losing my husband. I found a new doctor. Still your situation was dire and you waited a long time to be diagnosed. My heart goes out to you. You provided a succinct, compelling presentation of what you went through. I hope you continue to be healthy.
The apology from the GP would never have happened in the USA… too many lawsuits- can’t admit culpability. I’m glad she got that and she finally got well. ❤
Tbh id rather see the trainees fresh outta school and determined to make a difference. Sometimes I think the older docs get to overwhelm and in set ways
That is exactly what my dad had. Large B cell diffuse non-hodgkins lymphoma. He had it twice. He was in remission for about 7 years, so that was good. I stayed with him 24 hours per day for his last 10 months.
Thanks so much for sharing your story, I find it interesting that it takes so long for doctors to reach a diagnosis. I’ve experienced this so many times that I hesitate in going to see my doctor just to hear those dreaded words, “well looks everything’s normal”, when you know it’s not! By the way, your clothes are beautiful 🌹
I was done to me!! Even though I kept telling them something was wrong they failed me. My liver doctor said I had a low level of iron every time I saw her. She said tell your gp to do a battery of blood test. It took her 2 different times of seeing her. Finally I raised my voice to her and she said ok. I have multiple myeloma... we all really have to advocate for ourselves. Speak up, yell if you have to!!
Great blow by blow of your journey I remember all the feel’s like it was yesterday, I was stage four non hodgkins when I was diagnosed 2020 a year virtually of chemo and all that entails went into remission then five months later on one of my routine three monthly checkups and bloods my oncologist said your bloods look great all ok but I had a very sore back and expressed my concern to him he offered a pain medication script but I said no I think there’s something not right so eventually he sent me for a scan WELL. the cancer was back in four places so when you know your body you have to advocate and make yourself heard never take no for an answer I had a stem cell transplant in November 2022 after three months of intense chemo still recovering mainly lack of energy so I want to stress to you who are still fighting the fight to stay positive and make yourself heard nobody knows your body like you …. Hope you are well and continue to be so 💕
Sorry you had to go through this I’m trying to get diagnosed now and finding the doctors so arrogant and complacent it’s so upsetting a doc said to me the other day your digging too deep and I said I am I’ll and trying to find out the cause so I can treat it So upsetting !!!! Stay well ❤🌈🙏
I don't know about anybody else but here in the states you got to bring a bag lunch snacks drinks you going to be there awhile so if you got in and out there that's just awesome praying for you always
Thank you for sharing your touching story. I’ve had a few different symptoms for a couple of years, and my primary care in the words of another dr. “is blowing you off”. I have tests coming up, I’m going to be sure to write down the random symptoms and try to get help. God bless you 🙏✝️💕
I’m so sorry you were misdiagnosed and pushed aside for so long. I think that experienced doctors seem to sometimes lose touch with why they became doctors in the first place. They stop trying to connect the dots and really narrow down what is ailing a person, even when blood and imaging tests point to something being wrong. I saw a doctor a few months ago for chest pain and they ruled out cardiac and blood clot issues in my lungs, but when I looked at my blood test results, it was obvious that I had an infection as my inflammation markers were abnormal. That was not mentioned at all when I was spoken to about my diagnosis. I took myself to urgent care the next day and was diagnosed with flu A and B simultaneously. I told the doctor about my diagnosis and she apologized. Absolutely a classic case of having to advocate for oneself. I hope you get well soon 💗
Thank you for sharing your journey. I think you are an amazingly strong woman in so many respects. Your forgiveness to the medical profession is admirable. Yet so necessary for you. I feel many people who will watch this will push for more instead of accepting. Bless you going forward.....
I currently have a brain tumor, a nodule on my lung that grew so slowly they stopped watching it, and a nodule on my thyroid that grows about .1 mm every 2 months. And they told me I just have an ulcer, but they have done nothing to actually confirm I have an ulcer
@@nicolayoung7973 I have been keeping on them for years, I have gone from a US size 30 on my birthday in march last year, and then by December of last year I was a size 20.
This title and story is almost identical to mine. I was a full time carer for my mother who was also a misdiagnosed stage 4 cancer patient. I developed my cough in 2017 and thought it would go away like the “100 day cough”. I went to a lung specialist in 2020, for “extensive scans and tests”. They concluded, it may be asthma. They gave me a Cortisone puffer to make it better. It did nothing. I went back to the same Lung specialist 6 months later and ask to have a camera put down my lungs to investigate further. He said nothing was notable except I had a “possible yeast infection” at the back of my tongue. He said it must just be asthma. I ask whether he took a biopsy of my tongue’s infection, so as to be adamant that it wasn’t the more serious fungus that causes lung and then brain problems. I had to send him the medical literature on it. This was unfortunately the common story. I had to figure out for myself what the problem was. Even after requesting a biopsy on a small lump on the back of my neck and extensive blood work, I was told two things by my doctor. He said my extensive blood work showed I was normal and healthy and the biopsy was inconclusive. I demanded a referral to my mother’s oncologist. At first my doctor thought it wasn’t necessary. I explained to him that my mother successfully sued her doctor for negligence due to not giving her the relevant medical referral. He then gave me a referral. My mother’s Oncologist never dealt in half measures. He did extensive tests including a bone marrow sample. He confirmed what I had suspected. I have stage 4 Follicular lymphoma. He immediately booked me in for Chemotherapy and immunotherapy. I ask if Car T-Cell therapy was available. Unfortunately being 60 years old meant I didn’t qualify under the government health system. It’s discretionary after you use the less effective treatments for years. The unfortunate part of Chemotherapy is, its side effects in the long run will leave you so vulnerable that the cancer won’t kill you, a common cold or stomach bug will. That’s how my mother’s life ended. If anyone has a spare $500k, I can get the Car T-Cell therapy.
I feel your pain. I went through almost the exact same dismissal when I went to my GP saying I wasn't feeling well. I was sent for multi blood tests and it was revealed I had diabetes. For 2 years I was sent from one specialist to another told I had type 2 diabetes, then a rare formula of type 1 diabetes and then type 3n diabetes? Thyroid problems, gallbladder attacks, and also developed neuropathy in my feet. Doctors told my this was due to my own fault for not controlling my blood sugar! All while they were punching stints into my pancreas. 4 stints eventually , not to mention a random colonoscopy! All the time being told that it was NOT CANCER! I would have to get my blood sugar down to qualify for gallbladder removal. Finally sent to the doctor to schedule gallbladder removal and he wanted me to see one more Dr. , I sighed and went to the next appointment and this God send of a Dr. and man, changed my life in 10 minutes. He told me I had pancreatic cancer and needed surgery immediately. 1 week later I had whipple surgery and two years later I am still alive, and no chemo. I will not say it has not had its pains and problems, but I have time with my family and friends and even made a 3 month trip to Italy ! Thank you to God and Dr. S for my life.❤
I to was misdiagnosed probably for years and got so sick I was passing out all the time and had lost 30 pounds in a month and my sister and niece demanded my Dr put me in hospital at once. Within days I was diagnosed B cell lymphoma and it was stage 3b. Chemo started immediately and since you have to take so many steroids with chemo and I’m diabetic type 2, my blood sugar was over 800 and they sent me to er. I’m in remission now, 4 years
I went through a similar journey as you. I knew for about 8 years and I kept being prescribed antibiotics and antidepressants. It wasn't until my tumors were big enough for the staff at my hernia doctor's office to find with a sonogram. It was only after that that my non-hodgkin's lymphoma was diagnosed. It really does feel like you are going crazy. Cannabis kept me mostly sane through much of it. I still have a year of chemo to go through and so far so good. Stay strong.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
My sister gyn kept ignoring her for up to a year. She went to ER and told her she has cancer. I didn't know she was ill. I went to see her and 3 days later she died. I looked into this guy. He has so many lawsuits. Malpractice. Had i known she was having issues I would have helped her. He's being sued.
Last month February I walked into the bathroom and noticed blood all over my lips. I walked back into the bedroom and saw all this dry blood on my pillow. I coughed into my hand more blood plus a blood clot came up. Went to the ER right away. They ran tests, scans. Everything came back normal. My GP said just keep an eye on things and if it happens again we will send you to a urologist. So here it is March 11th and still have no idea why that happened to me.
I saw several doctors, & they all concurred that the black & blue on my ankle that was not going away for over a year was "nothing ". FINALLY, a Dr decided to do a biopsy. Outcome, lymphoma. I suggest if your gut is telling you something isn't right, DON'T give up until a Dr takes you seriously!
I've had palpable lymph nodes in the left side of my head and neck for 6 months. I have marked hypertrophy of my adenoids bilaterally, and the left side nodes are 8-9mm, just below the size criteria to be considered "pathologically enlarged". CBC is normal, but I'm tired all the time, I lost 10 extra pounds after my last two babies. I'm down to 94 pounds. My skin is itchy on and off, and some nights I sweat a lot and wake up with wet skin. My doctor says I just have allergies because I was getting left sided headaches too. His answer to me is to take Flonase and 2 other allergy medications and come back in a month 🙄 I don't want to fight the system anymore. God help my 6 young children if this turns out to be something serious later down the road.
@@nicole8307left sided headaches do NOT mean allergies! One sided headaches mean migraines. Find another Dr. It may take a few before you find someone that hears you but stay proactive. Something is definitely off with you. Keep listening to your body.
Exactly my diagnosis!! "Diffuse large B-cell non-hodgkins lymphoma." Mine was under my sternum, wrapped around my neck, so i was basically being strangled slowly, so it was beyond coughing- it was suffocation
You are intelligent and courageous, many patients, especially women, are not paid much attention, when they complain about symptoms, that could be very important, in diagnosis of their issues, best wishes to you.
Your story is a bit like mine. You have given the best message I have yet seen and that I can think of for others who will begin this kind of journey too.
I'm so sorry for your experience, Leanne. I'm also sorry for anyone else going through a similar thing. I had a rare uterine cancer in 2019, which standard blood tests didn't highlight. I had a major operation and with awful complications i.e. anaphylaxis and a huge hemorrhage. My bowel then wouldn't work, despite the hospital trying everything. That was excruciating. I have a large vertical scar on my abdomen, which was unitially very neat but a few hours after the nurse removed the staples, I was in the bathroom and my stomach just burst open, spurting blood everywhere. It was like a scene from a horror movie and I was petrified and screaming. Unfortunately, all this trauma led to me suffering horrific PTSD which just crept up on me and totally took over my life for a while. The day after I was discharged from hospital, i was rushed back in an ambulance, as I couldn't breath. The PTSD was very severe for a time. I just sat trembling for weeks, couldn't eat, sleep or talk to anyone, including my partner, who was wonderful. I eventually recovered but the whole thing had such a profound effect, that it broke my partner and I apart. I think that this partly relates to the fact that I too am a glass half full person and always made an effort to look good and got back to work pretty quickly (too quickly) after everything. I am now having dreadful problems with horrendous fatigue, which led to a diagnosis of CFS/ME. It's utterly debilitating but in top of this I am also unwell, now, with swollen lymph nodes in my neck. I do sweat profusely but have done since my op in 2019, so can't be sure of a direct link between that and my glands. I too have been back to my GP several times feeling unwell (wiped out) several times for quite a while i.e. over a year. My last visit was yesterday and I have to go back next week for blood tests, which I have had taken so many times already. Like Leanne, when I had Cancer in 2019, the standard blood tests just highlighted raised inflammation markers and my illness was attributed to a possible infection somewhere. The same reasoning can be stated for swollen glands (lymph nodes, too), although I know I don't have an infection and knew that the first time round. My issue is that whilst all these return visits to the GP are going on and my illness isn't dealt with, I have to take time off work and am on the verge of a warning for absence. I am 53 years old and have never had a warning in my life. When this happens, if I then have to take more time off, I can then lose my job. I am so proactive about my health but don't know what more I can do. For the past few weeks I have been bed bound for most of the time, apart from a few hours each day on the sofa. My glands are really painful now. There's other symptoms such as itching (no rash), an awful headache and arm pain but I'm just here not quite knowing what to do. Fingers crossed for a positive outcome. Thoughts are with anyone else struggling.
What a wonderful thing for that doctor to apologize. I have been misdiagnosed so many times and have learned to fight for myself. It doesn’t always work. One doctor told me I was crazy.
I am so sorry to hear that you had to go through this. It’s unacceptable that you sought medical help and they never could tell what was going on. It took a student to take you and your symptoms seriously .
I too had B-cell non Hodgkin lymphoma. MRI picked up cancer and mass in spine. In in 20 2017. 5 bone biopsies done . R- Chop started with Radiation. In remission now
It’s good he admitted it and apologized. We all unfortunately make mistakes in the medical profession, I have made a couple being an RN that I will NEVER forget. We are imperfect humans and some of the errors are from inexperience, fatigue or ignorance, or imcompetence…or as you say, being so busy we don’t have time to slow down and notice critical pieces of info.. I am sure your medical person won’t forget the mistake made on you, he is now looking at the enlarged spleens etc., as important concern.
I'm so sorry this happened to you. Sadly dr's dismiss a lot of things way too often. They are trained to look for horses..... and they miss the Zebra amongst the heard of horses. It has happened to me as well for 29 years with my autoimmune disease and chronic pain. Everything was explained away, I was gas lit my physicians everywhere I went, dismissed, told it was all in my head, etc, etc, etc. And as another commenter said, here in the US they will never apologize or admit they had made a mistake.
Welcome to autoimmune hell, we all need to get off at the next stop cuz it's a horrible thing Tobe tying to get help for. Advocate for you, cuz no one else is going to.
i’m in a similar boat. In feel like doctors always look for the most likely explanation, but that doesn’t work anymore when all the more likely explanations are exhausted, yet you still know something isn’t quite right. Finding the right specialist is a huge pain when your symptoms are broad and not specific. My doctor at least gives me a referral if I ask.
If every doctor could admit what your original doctor admitted this would be a much better world with less severe diagnoses. Doctor's egos are a big issue and they just don't listen to what a patient is telling them. Patients know when something isn't right. Always get a second, 3rd ....opinion if you feel you are being dismissed. Thank goodness you were finally validated and received the correct diagnosis. So glad for you and your family. You likely saved many lives through this whole process. Your original doctor won't be so nonchalant with others, and pursue persistent symptoms with further testing. COVID not only caused many deaths because of the disease itself. It also killed many others without a COVID diagnosis due to the extreme lengths of time they had to wait for diagnoses, treatments, and surgeries of other diseases like cancer. Take care of yourself and may you have a blessed journey for the next 1/3rd of your life.
I first reported a rash on my arms to my local GP surgery 2 and a half years before I was finally diagnosed with Stage 4 Hodgkin's Lymphoma. I was told over and over again that it was eczema or that I was allergic to sunlight! Even the dermatologist didn't pick it up! Eventually I developed lumps on my legs called Erythema Nodosum, which prompted a chest X-ray. The results of the chest X-ray revealed a shadow on my lungs. The CT scan revealed enlarged lymph nodes in my chest and neck, the biopsy revealed Hodgkin's Lymphoma and the PET scan revealed that I was Stage 4 and that the cancer had spread to the edge of my lungs!! I had 6 months left to live before I started chemotherapy, and I'm just coming to the end of my treatment. Thank you for sharing your story. It's shocking how these things are not picked up soon enough. We need more stories like this to bring about positive change.
I hope you will recover from this Rachel. Im feeling all of the symptoms but dont have the capability to consult a doctor. I will be praying for your fast recovery
Blessings🙏
I'm praying for your recovery Rachel
Hope you get better and get well
The FDA are the want people sick. Endless customers
My two young sisters past of skin cancer and the other ovarian cancer. My father past of colon cancer and my mother had breast cancer but died of a broken heart. I have monoclonal gamapathy pre-cancer and my wife has multiple myeloma. There is something seriously wrong in our societies! We all know what the problems are but its easier to focus on saving the planet by changing from plastic straws to paper straws. My deapest prayers to everyone here who suffers and has to fight.
It’s taken me 5 years to finally get my diagnose. I tried to tell them, the Doctors. Over and over. I finally had a bronchoscopy and biopsy. And I was right. Cancer. It’s now spread to my sinus and brain. I just sent my doctor an email saying, I told you. 😞
So Sorry Hope you get the help you Need Now
What type of cancer?
That’s a horrible situation they’ve thrust you into. No consequences for them, you bear their passive aggressive attitude results. I am so very sorry you had to go through that long, gaslighting experience. 🙏❤️🙏For you.💔💔💔💔
@@Cwgrlup good advice, but in Australia I doubt she’d get much back, except more bills, and frustration.
So sorry to hear, what was your full list of symptoms? x
I'm so GLAD that you finally got answers! My husband was first diagnosed with Follicular Lymphoma when he was 55 years old. He had a lump just in front of his right ear. The dr performed surgery and as soon as he opened his face up he saw that it was cancer. So they did a biopsy of what they removed at he was told it was Follicular Lymphoma. They did a full body scan and said at that time they were just going to wait and see because they didn't want to start cancer treatment until it started to be aggressive. In no time it had changed to aggressive B-cell and told him he had to have treatment right away. His treatment was "CHOP". He had to be hospitalized because the treatment was so brutal. They also wanted him to have a stem cell transplant. He said no. My husband survived the treatment and was told he was in remission. Now my husband is 78 years old and 3 years ago he was diagnosed with F. L. again. And they told him he probably had it for at least 3 years. His symptoms started out as an annoying cough that wasn't productive at all. He was in the middle of changing doctors so here in America you go to Urgent care and are seen by whatever doctor is on duty at the time. They kept diagnosing him with pneumonia and would give him meds and he would go home. After the 4th time of going to Urgent Care, I went with him and told the doctor that he doesn't have pneumonia which is what he tried to tell us he had...again. I said he needs to see a specialist, something is wrong! The doctor said, well an Urgent Care doctor really doesn't have any pull with specialists. I said please try! So he stood there and typed a note to a pulmonologist. My husband was finally contacted by a Pulmonologist's office and an appointment was made. As soon as he pulled up his xrays he said no, he's never had pneumonia. He said I bet your Follicular Lymphoma is back. He had 2 large tumors right behind his esophagus and had closed off his right lung. My husband was NEVER told that there isn't really a cure for FL and that you will have to keep going back for "maintenance" when the cancer starts to grow again. His treatment was Retuximab and Revlimid for the last 3 years. He is finished with his treatment and is doing great. We have to trust ourselves and realize that we know our bodies. When something feels wrong we have to be insistent with these doctors.
!
May God continue to bless you both! I have a "wait & watch" lymphoma. It can be nerve racking. Enjoy every day!!
@@marloulman104 Amen and thank you! We certainly ARE enjoying life.☺ May God bless you as well.
I had a swollen lymph node on my inner thigh. Was told as we got older we got bumps. After a year I went to another doctor who did biopsy and found my Follicular Lymphoma which like yours, was a watch and see. Also turned into B Lymphoma with same R Chop like him. Mine is also back after 4 years on my spleen. I also have had to be more forceful then I have ever been in my life!! On my 6 mo checkups prior my oncologist never laid a single finger on my body. Just the same questions every visit. Luckily I had a CT scan on my 6 mo visit. I have lost so much respect for all Dr.
@@pattylyman7907 we feel the same about drs. My husband developed an infection in his lungs and he said its just a virus. Well, I talked to our primary dr and said I wasn't accepting that diagnosis..viruses don't last over a year. She sent us to a Pulmonologist and he did a biopsy and found it was a bacterial infection that you get from Retuximab. A bacteria that he will never fully get rid. The bacteria is encapsulated so its difficult for the antibiotic to fully clear the infection. I don't have a problem with telling these drs what I think, but they have pushed us to that point.
I will be praying for you.
@@artbysonyabadgley And I for you and your battles
I could really relate with your story. I have NonHodgkin Lymphoma, Mantle Cell, which was diagnosed in 2015. Our medical care in the States has become a nightmare. I’m mostly ignored by my GP and Rheumatologist. My cancer isn’t curable and now I am 71 years old. I see the difference in how I’m treated. Each doctor wants to send me to a specialist for every little problem. I have become a different person. I will see my oncologist in a couple of weeks and am expecting another CT scan. I pray you have a long life and can beat this insidious disease. It’s a journey and it’s not easy. 😊🙏🌸
Is your cancer so called not treatable because of the mantle cell??
Mantle cell lymphoma is “treatable but not curable.” Patients can survive a long time or else they will succumb in short order.
@@teamtrioauto5474 yes mantle cell is definitely treatable- it affects the large B-cell, which is also treatable. That was what I had, stage 2. Under my sternum, wrapped around my neck, beyond coughing: suffocation by strangulation from my masses. I have been clear for 13 years now.
Lisa, thank you for sharing your experience here. If you'd like to share more, please feel free to reach out to our team: alexis@thepatientstory.com. Thank you.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems
My mum was misdiagnosed for years too, doctors giving her pills, eye drops, test after test only to tell her that there was nothing wrong with her..... 6 weeks later after getting a second opinion from a different doctor she was given 6 months to live because they found she had pancreatic cancer. She died exactly 6 months later Christmas night. NEVER stop looking for opnions, listen to your body and don't take no for an answer until you get to the root cause. You must advocate for yourself, you have everything to lose. I'm so happy for Leanne that she finally got her diagnosis and treatment and that her recovery will be flawless with a very long and healthy life ahead of her.
I can relate to this - I have had worrisome symptoms similar to that of pancreatic disease...but no CT scan has ever been ordered...just ultraound which didn't show the pancreas clearly..so I'm told that nothing showed up. So, what do you do! Just wait until things get worse...yes...in Canada that is what is happening. You can't see your doctor for more than one symptom, so, which symptom do you pick? It is so sad, and very dangerous...
The problem is people shouldn't have to get opinion after opinion. Doctors should just do their job. Fatigue is one of the biggest symptoms in blood disorders and along with an enlarged spleen should have rung alarm bells. I am a Registered Nurse and knew this so why could they not pick it up. It is not as though she had some rare one in a million disease. Doctors are too flippant and dismissive.
@annekennedy8127 I am Canadian and have had horrible symptoms for 2.5 years now and I stopped going to my Dr. because there are too many symptoms and he only allows me to address one.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
@@annekennedy8127 - NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
So sorry .My wife went through the same thing and Passed away 3 months ago and it tore my heart apart God bless you .Stay strong
So sorry for your loss😢 May God help you through this!
I thought lumps (swollen lymph nodes) wete a first warming sign? I have these now in my neck and terrified. Didnt anyone have lumps?????
@@a.rosesrbleu9580 can you please read what I typed above I don’t know how to spell or punctuate and I don’t know anything about any of this this can you please see what I typed and what to do?
My mother was totally dismissed by her doctor over and over. He told her that her symptoms were menopause. She deteriorated over a year or so. pain sent her too emergency. It was a young intern who gave her an ultrasound and found advanced lymphoma. Get second opinions until you are satisfied
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems
@@heatherjackson2520you are so not alone 🎉. I'm going on year 3 and right there with you trying to make my way through this minefield of medical "care" for post menopause women.
Unfortunately ageism sexism and dismissiveness are the norm.
I'm shocked to see so many in the comments with the same story 😳
This makes me so tearful. Thank you for sharing your story. My father recently passed from Stage 4 cancer. He had been going to doctor after doctor and it was not detected.
So sorry about your father , may I ask how they finally realized he had Cancer?
My father died from cancer that was incurable, so early diagnosis or any diagnosis didn't matter.
I had the coughing for a couple of years. I stopped eating in front of anyone because I’d start coughing and it was embarrassing. I finally had a MRI because of tailbone pain, and it showed Leukemia. It’s so easy to rationalize away symptoms.
Hope you’re doing well.🌸
Hope you're doing OK.
@@shelliebancroft4145 I am. Thank you.
😳😳😳 OH MY GOD !!! I HAVE BEEN EXPERIENCING THE TAILBONE PAIN for 5 months along with the 2.6 years of coughing, flank pain, inguinal pain from HUGE Lymph nodes, neck completely immobile from rock hard muscles and ENLARGED LYMPH NODES, not able to sit AT ALL because my legs go numb and have EXTREME PAIN in thighs, knees, calves, feet. Then unable to stand up after 10 minutes of sitting because hip pain. Cannot lay on back with phone as my arms go numb and start ACHING with shooting pain to my forearms, hands and fingers. What imaging study should I request for the tailbone pain/coughing and what SPECIALIST should I seek for treatment if there is such a thing ? 💜🙏🤗 I hope you are in a treatment plan and are surrounded by loving compassionate supportive people. 🙏 🧡
❤
I have tailbone pain. I went to my dr about it. Doubt they even put it in my medical notes for that day. Still have the problem on and off. Don't know how to get them to listen to me. Have also complained about how my arms hurt when I put them up over my head.
So glad she mentioned the cost of all the tests as not all could afford to keep digging for further answers …
Very articulate well spoken thank you Leanne. Im so sorry to hear how difficult for you to finally be diagnosed.
I’m so glad the GP was empathetic and apologized I believe you taught him more then medical school textbooks could ever had.
The med student was a she with what sounds like a great bedside manner.
The medical student or intern who was so pivotal in getting you correctly diagnosed is a fine example of someone who sees the whole patient, researches their history and findings and then hypotheses possible diagnoses. She saved your life and will go on to help so many others. I’m so glad she was there when you desperately needed her!
Wow! Identical stories here! Mine took 6 years to diagnose...lymphoma and metastatic cervical cancer...stage 4 ,but could have been prevented. I was told I was working too hard .which cause intense pain and I had " allergies" ..nope I had the coughing for several years too..
I’m so sorry you were treated like that. Women are always discounted and you did not deserve it at all. 🙁♥️♥️
Your story is almost identical to mine. I only wish my gp had given me an apology instead of medically gaslighting me. So glad the other Dr was able to connect the dots and help you get an answer. Sending love!
You can report their gaslighting to the American board of medical examiners. Your doing so could save another person from going through your hat you experienced and maybe save someone's life. Doctors get alot more cautious when patients report their behavior it is taken very seriously.
My husband ran across this story and it just really really hit home for things I have been going through the last 3 yrs. He showed it to me, reluctantly, because he didn’t want to scare me. There are SO many similarities. But I told him, I don’t *think* I have cancer. But if I do, at least there will be an explanation. So it doesn’t scare me. It does the opposite. It’s giving me the courage to keep on searching for answers and not just accept the unknown. So thanks so much for sharing this story. I do hope I can find some answers. I am so tired of fighting an invisible monster. Thank you 🙏🏼 And for this beautiful woman, I am so glad you are still here for your family. 🙏🏼🙏🏼🙏🏼
PLEASE consider gettung testing for Lyme and co/infections. The Best test is a DNA test that looks for the bacterial dna, most accurate.
With cancer rates so high nowadays, one in 5, you would think doctors would take peoples symptoms seriously???
Exactly this makes me so angry
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
@heatherjackson2520 if youre in the U.S., try to find a nurse navigator. Many cancer associations have hotlines that offer assistance, especially lymphoma societies.
I'm so sorry you had to go through such a horrible experience to finally be heard. Sadly I feel that once we (especially women) hit a certain age, we somehow become invisible to doctors. It's as though we no longer really matter. I'm in Canada and it's the very same here. We have to be insistent and determined when we know something is wrong. It makes me want to scream "I'm 61, I'm not dead!". Much love sent your way. ❤️
Agreed. As much crap as American healthcare gets, it's largely undeserved. I'm American, but was born abroad and lived abroad as an adult. I can state for an absolute fact, many other "advanced" countries are more worried about treating the symptom and getting you out the door than finding out what is actually wrong. Canada is simply "suffer and wait" healthcare. That might offend some people, but they 1: don't know what they are talking about or 2: have some fetishized ideals about socialized healthcare. I was on a medical clinic board right near the Canadian border in Alaska for years. I can't tell you how many patients were Canadian who came over the border to pay out of pocket for routine things that would have them waiting weeks / months: tooth abscesses, unable to get dentures (you know, so you can eat), infections, etc - to very serious illnesses.
No trust me it's all ages. They dont want to work.
Your story is so moving. You are one strong woman. Put yourself first in every part of your life!
In USA my daughter was told last year during a week long hospital stay at UCSF. That she has lymphoma. It’s been a year and they’ve still done nothing for her, no treatment nothing. We fight daily with the system here but have not given up. Praying for the one good Doctor To help her.
Please push the squeaky wheel gets the oil. Where do you live? Here we can get a patient advocate with the insurance, politicians can be pushed to give assistance also. If you're in thr USA I might could help..??
OMG I am so sorry that is outrageous
Leanne, I'm so sorry you went through all of that but happy you are here to tell your story. Your story sounds very similar to my story but I'd already had a prior cancer dx with a different lymphoma 7 years before that. I KNEW there was something serious wrong with me because I'm a nurse and know my body extremely well. I was frustrated that I had to go through all the night sweats, relentless itching face and neck etc and exhaustion, horrible coughing, and brutal and worsening back pain and unable to sleep etc. My daughters, thankfully, called an ambulance for me due to the incredible pain I was suffering and wasn't sleeping because of the pain. After the ER visit, I was admitted and I had surgeries and so forth. It was a whirlwind of appointments and seeing an oncologist out of town, which was a challenge. After 8 R-CHOP tx, 2.5 years of chemo/cancer tx, I felt much better except for the long term side effects I will have to live with. I know I'll never be the same, but want to live until all my kids to get married and have their families, anyway. Message for everyone: TRUST YOUR GUT FEELINGS and DON'T GIVE UP! (especially if all tests haven't been done and/or you truly feel there's something very wrong!)
Leanne, as you said in your video, "Advocate for yourself!" ❤
Thank you for this, I’m sick all the time, same things, finally got a referral to a Hemo/Oncologist this month! Thanks for the help! God bless you, praying for you
Good luck Jennifer, I will say a prayer on your behalf
If it weren't for the fact that I am a receptionist at an Oncology/Hematology Department working w/ Chemo patients, I would've never known how serious this all is that's going on w/ me. DVT in a 27 yr old is, um, unheard of unless you're in your 60s🥴
Leanne, you are an amazingly inspirational woman! So much love and respect ❤
I LOVE this comment! 💗
I just saw this video and just found swollen lymph nodes in my body that I didn't notice before due to weight gain. My partner now can see the one protruding out the side of my neck and we can't unsee it! I have had severe fatigue and a lot of other issues. This has really opened my eyes and I need to take my health seriously and advocate for myself at the doctors.
Three years ago I had a lump on the side of my neck and the doctor I was seeing at the time said it was a goitre..looking back now I can't believe I just trusted her.. Anyway I left it untested for a good couple of years and then one day someone said to me you should go get that checked.. It wasn't bothering me or anything like that but it was still a lump and lumps get checked. So I did. And one test after another it turned out to be some form of lymphoma but wasn't cancerous. A lovely doctor by the name of Dr Slaughter cut my throat and removed it. I couldn't make this up...that was his name. I probably shouldn't say he cut my throat...he removed the lump.
Then I went in for bloods and check ups every 3months then 6months then a year and still nothing has progressed. I guess I'm telling you this that sometimes finding a lump doesn't always mean the worse. I sincerely hope everything is going well for you. Its the scariest time of ones life...and im sorry u are going thru this. x
That’s the same place I could clearly see mine 2 years ago then the dr found 4 enlarged. Had CT scan they said everything is fine . Well the nodes are still protruding? I’m confused. I will show her again next month . Good luck to you . ❤
❤
@@finni-h2x And I thought my doctor's name was funny, Dr. Strange.
Well it turns out I have thyroid cancer, spread to my lymph nodes! :( I am going for a FNA on my thyroid nodule tomorrow. I don’t know much other than it is very likely cancer (the microcalcifications found in my thyroid nodule are also present in the lymph nodes) and given my family history I have no doubt it is. I am so grateful for this video I think it may have saved my life, hopefully anyway.
You’re so brave to share your story, thank you so much. Listening to you could be my own story I’ve been going through the last 2 years. My GP decided to “retire” as soon as Covid hit and my symptoms basically were ignored for all this time since. I have lupus as well, so docs like to blame all my newer or different symptoms on lupus. Like you said, you knew it was different, I do too. I’ve been waiting for a CT on my lungs for 5 months! In Canada we don’t pay to have tests..instead we wait..and wait.
God Bless
You can choose to pay. You don’t HAVE to wait.
@@Lilitu333 good for you if you can afford to pay thousands in private testing. Canada is supposedly free healthcare.
Yes after a lupus diagnosis it's like good luck getting taken serious, same with chrones disease
You're right, doctors tend to blame for everything if you have already a disease diagnosed.
I hate that!
How are you?
I have lymph nodes enlarged in the neck and chills,sweat, my neck is swollen..😢
I hate that, I have Lupus and it becomes a catch all for any new symptoms. You know hoe hard it was to even get your diagnosis so you know getting anyone to believe you is difficult. Don't take that as an answer
Leanne you are such a brave woman. We had similar problems with my dad’s care and unfortunately he ended up passing away from his cancer. We nursed dad at home and one day the doctor who gave my dad antibiotics for months without seeing him during covid came to our home and my sister stood with him beside my dad who by this time was unconscious and made him apologise. I am crying here as i type this. You sometimes wonder how they become doctors.
My PCP is overbooked, eyes stuck on his computer, fails to reply to anything I say, office staff all start a the front desk and are "promoted" to MEDICAL ASSISTANTS🙄
Mrs. MD works in the office, handling billing and very unfriendly.
Lab results are never reported to the patient, unless by chance at a pending office appointment, or you call.
This type of practice didn't exist decades ago, now it's common place.
How many patients are falling through the cracks with missed signs of serious illness?
Since the pandemic, things have only gotten worse.
I'm truly unhappy, but fear that finding another MD will not make a difference.
My daughter. Was diagnosed with non.hodkins lymphoma aged 26 right out of the blue after tonsillitis for the 5 time in 8 moths .... then breathless. Diagnosed in a and e there and then. Massive shock ...didn't go home for 3 moths from that day . Only after an x ray by an astute doctor .. only to find a large mass in her chest.... after 6 rounds of chemo 3 years down the line now. Still all good . Lymphoma notoriously difficult to diagnose. Big hugs. And very much found your explanation very interesting. Thanks. And hope you keeping well. 🤗
Oh my goodness it was like listening to my own story which is happening right now...I was told over the phone by my GP what I had.I was on my own when she told me..I was so angry with her so very unprofessional and no compassion what so ever. I've just had the biopsy and now waiting for the results my journey is now continuing so what is next. I have the love and support of my family, friends and my beloved animals unconditional love all the way.
What a story! You seem like an amazing person. Thank you for being so open and honest.
Leanne ....God bless you for your courage and inspirational story. Thank you for your grace and for forgiving the medical staff. Wow what a beautiful lady. Xx
Prayers for you! Cant get over how 100% our stories are alike!. I had stage 4 cervical spread to lympnodes im 42. It was misdiagnosed as everything even by a cancer center in my hometown (scary) went 2hrs away to Atlantas Emory they found it in 3min after a CT 🤦♀️ ive now done treatment for over a year got rid of most of it🎉 but found out last night (again after being told i had a uti) that its back and in my liver. Cancer is no fun. Prayers to you!!! ❤
Please watch the cancer survivors vidéos...don t stick ti thé doctors advices
Jennifer, I am so sorry to hear of your struggles. I am about two hours from Emory myself. I am originally from Atlanta. Where I am the ER is like an Urgent Care and I know about the cancer centers where I am because they have been searching for my daughter's cause of her illness for years. You are in good hands with Emory. God bless you and may all be well with you.
What were your symptoms ?
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
It took over 3 years to get a diagnosis for me. The last 3 months were just rediculous. Physically I was going down hill. I would try to eat and it felt like I was trying to swallow gravel. I went from 170 pounds to just over 100 pounds in 3 weeks. I was told to eat more.
The huge lymph under my right arm, the lumps in my throat, and the scan showing something growing on my liver should have been enough to send me to a specialist.
I called the ambulance for myself. After a torturous time in the local ER I was sent to the big city. I was done I did not care to live any longer. I was just 100 pounds. They weighed on the gurney. I could not stand.
Aggressive Large B Cell Lymphoma. Finally. Something.
There is so much more of my story and it would take up pages to tell it all.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
I'm in Aus and thank you for sharing!! I'm not getting a firm diagnosis. Menopause. Yep. ESR high, CRP low. Continuing to find answers. Your story has been helpful. ❤
You are an amazing woman! Know that you CAN make it through anything. Look at what you have already made it through!!! You provide inspiration for all women to realize that we are stronger than we think.
Your story is exactly like my story. I’m still having chemo so we’ll see what the end results will eventually be! Thank you so much for sharing and God bless!
Whenever I have anxiety attack, I say to myself...."If I live...I live for Jesus"...."If I die...I will be with Jesus!"
For if we live, we live to Jehovah, and if we die, we die to Jehovah. So both if we live and if we die, we belong to Jehovah. Romans 14:8
Here in the US, they suck too. About 15 teen years ago. I became very sick and went to my doctor he ran some tests and said he didn't know. I went home, then one month later. I was hospitalized for weight loss of 73 pounds . At the hospital I was told I was a hypochondriac and that they couldn't find anything wrong. 2 years to the day I was hospitalized again with over 100 lb weight loss and teetering on the edge a life-and-death. I was transferred to another hospital where they had a Disease and Control doctor available. When he walked into my room he told us that he believes I have a disease called lupus and that he would be running the test to show that lupus is what I have. 2 Days Later after a four-year battle with doctors telling me it was in my head that I was actually diagnosed with a disease called lupus. Lupus is an autoimmune deficiency disorder where your body fights itself it considers your body of foreign object. There is no cure for Lupus.
Oh my. I'm sorry to hear that 😔 I hope you are as comfortable as you can be. Sometimes the medical profession fail miserably. You deserved so much better than that.
Shellie, I am so sorry about what you are going through. There is a doctor named Dr. Brooke Goldner who had lupus beginning when she was a teenager. She became a doctor and healed herself, and now she helps others with chronic illnesses, not only lupus but other autoimmune diseases as well. I wish you all the best.
@@elizabethhollar1159 There is no cure for lupus.
@@kathleenmaloney915 Lupus is one of over 80 different autoimmune diseases. None are curable. I have PsA and am now being screened for lupus. I am also having a second CT scan for possible lung cancer. So many symptoms overlap--loss of appetite, weight loss, fatigue, shortness of breath, almost daily low-grade fevers, and more recently a nighttime cough. Fortunately, ever since my PsA diagnosis (which took 3 years to get), I have assembled a wonderful team of specialists. But that was after firing my primary care doctor, a neurologist, dermatologist, and rheumatologist who were not listening to my concerns or would refer me to someone else.
@@jodybogdanovich4333 A lot of bad doctors. You may want to ask to be tested for Sjogren's. Before I wa diagnosed, I was told that I had emphysema. CT can showed inflammation and scarring of the lungs due to ILD. I did not believe that I had it. Saw two different pulmonary specialists--both said autoimmune diseases do not cause lung scarring. Sjogren's and Sarcoidosis are two that definitely do.
Advocate advocate advocate for yourself. Absolutely! I had a similar experience starting at age 35, and that doctor told me it was all in my head. Fast forward two years they find a small lump near my breast. By this time I was suffering from pneumonia and bronchitis constantly. They sent me to see a therapist and the therapist told me unless it was something organically wrong with me I would never get well. I asked a friend what that meant and she says that means if you don't have something like cancer. I took my mammogram imaging and I ran to the cancer center looking for a second opinion.. within a few hours they knew immediately that I was facing either Non-Hodgkin's lymphoma or AML. I had weeks to live, it was everywhere but the liver. I ended up getting treated for Non-Hodgkin's lymphoma, and in ten months I was in remission and still am. The Doctor who told me it was all in my head , ran off and never returned to his office. No apology, nothing. Sadly about 6 years later my brother passed away from the same cancer. I'm resilient, and that helps fighting a horrible disease. 26 years later the chemo is aging my heart, kidneys, lungs and I have 3 autoimmune diseases. If I had to do it all over again I would. Advocate advocate advocate for yourself, no one else will.
Medicine is not an exact science. In the end be your own best Dr.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
That's bloody worrying. Glad to see you're doing better ❤️
You’re such a beautiful lady with a good soul, I’m sorry you went through all of that stress and worry.
It makes me so angry when I hear the dismissal that patients get from doctors. My 18-year-old daughter has been diagnosed with stage 4 Hodgkins and had all the symptoms since 15. She was told the reason she was fatigued was that at 15, they felt she was chubby and needed exercise. The itching also could be a cause of dietary issues. Took her again because she had swollen lymph nodes that hadn't gone away for over six months and were told these can take time but they congratulated her on her weight loss. She had night sweats and was experiencing nausea and vomiting. Then she started having horrible pains in her hip. Finally, at 18 she found a doctor who sent her for a scan and was set up for a biopsy. She had numerous lesions in her neck and sternum and also the pain she felt in her hip was cancer that had reached the muscle but not the bone. I was so mad at the medical professionals who dismissed her but I was even madder at myself for listening to their nonsense. My daughter has been cancer free for 2 years now. All through her treatment she was the strongest person. I could have never endured half of what she went through. Yes, there are good doctors but It's so wrong to be ignored. I'm glad they finally listened to you.
Thank God she's OK! Don't look back. Keep looking forward with faith and hope!
I remember when I was 12 or 13 and my mom took me to a dr for all these symptoms I had been having and the doctor told her "sometimes teen girls make things up for attention" to explain away my complaints of feeling tired, depressed, in pain, and generally unwell. I also had jaundice, chronic constipation and weight gain despite having been in track in school till that point. They still managed to ignore and dismiss all that somehow, even though those were observable symptoms I couldn't make up.
I’m in in
I'm having the same symptoms as your daughter and I can't get anywhere with the doctors. They tell me I'm depressed and want to refer me to mental health services! An mri would solve so many questions but they refuse.
I am so sorry. That can be so scary.
leeanne i am so glad you told your story, and delivered it so professionally, i've been having ongoing issues too, you give me courage to search for answers. They forget they're working for us, we pay them, they don't pay us, but they make you feel like you're holding them up alright.
Thank you for your story. I feel so much better having to wait over a month to see a specialist and still have not gotten a appointment
Leanne you are amazing. All the best to you.
It is very rare to find a good doctor these days. I had balance issues, falling over, headaches and I went to five different doctors, emergency room and a specialist and was told to lose a couple of kilos, it was psychological and everything in between. I told them I thought I had a brain tumour and asked for an MRI. I was fobbed off every single time. It took nine months to get that MRI only because I refused to leave the hospital without one. I was then diagnosed in a few hours but the damage had been done. I put in a complaint to the Medical authorities and was told in writing "we don't like to punish doctors". So the patient has no hope. We shouldn't have to be going for second, third and fourth opinions at our expense. Doctors should just do their job and not think they are God's gift to the human body. I was a Registered Nurse in theatre and I have no faith in the medical profession. I have seen in all.
You contacted the wrong place if you want to be taken seriously tell the doctors that ignored you that they were wrong, imply you're going to sue, put a little fear in them so they will listen to the next patient more closely. You may just save someone's life.
Someone should begin an online pétition about how doctors don't take us seriously, etc. It's happening everywhere so much.
They misdiagnosed me for years despite my positive labs that ignored me.
I have lymph nodes enlarged in the neck, I have sweat, pain, swollen neck, it's extremely painful. And gotten worse. But I'm scared of doctors because of their behavior. 😢
I'm so tired of this.
One day someones going to get that stage 4 diagnosis after so much effort and there going to seek some revenge
@@lillyrocks2011go to an ND or FMD it will change your life
100% agree I am so sick of having to go to so many doctors it’s pathetic one should be all we need
What a lovely woman you are God Bless you and I agree Thank God you were given a Dr in training🙏
Thank you so much, Leanne. I hope your future is bright and filled with life.
It’s good they apologised but they have no right to be dismissive in the first place. It is so frustrating and distressing to have to fight to be heard when you are already in such bad health, it makes you so much worse and more ill. Doctors need to start being held accountable especially for the people they accuse of being a hypochondriac when they are literally on the verge of death and trying to get help. I don’t see how this isn’t getting better or why it’s even still happening in this day and age.
I agree with you. But sadly that doctors don't take the patients seriously is so common now.
It's always being struggling to be heard or taken seriously.
Seems they want to probe there's nothing wrong.
@@lillyrocks2011ikr it’s disgusting
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
GOD BE WITH YOU IM PRAYER FOR YOU AND MY GIRL FRIEND
Leanne, thank you very much for sharing your story. I admire your resilience and determination to advocate for your own health. Your story is a reminder to all of us of the importance of self-advocacy in healthcare. I hope this serves as an inspiration to others who may be going through similar experiences. As a future physician, watching stories like yours, is a powerful reminder for me to take the time and actively listen to my patients. I commend your courage in confronting the doctor who initially dismissed your symptoms. It is unfortunate that it took so long for you to receive a diagnosis, but I am glad to hear that a general practitioner trainee was able to look at your symptoms holistically and provide the correct diagnosis. Unfortunately, this experience is all too common and it’s disheartening. Doctors are human and can make mistakes, but they must practice open communication and establish trust with their patients. That is why it is essential that healthcare providers must take a holistic approach to patient care and remind themselves of the ethical principles of healthcare, especially ‘nonmaleficence’ (“to do no harm”); in your case and to many others with similar experiences, to do nothing is harming.
Again, thank you for sharing your story and raising awareness about the importance of advocacy. I wish you all the best in your continued journey and I hope you are provided with resources toward recovery.
I wish you success as a doctor, think about these stories and even if it turns out one patient is just a complainer or another is drug seeking not everyone falls into those categories because it's a person you're looking at not a category or a number. Think of every patient as your mother, father, brother, sister or grandparents and think how would I take care of those I love so much? Then think this person in front of me is someone else's,mother or father or sibling, treat them all well. Don't get jaded by an awful system that makes medical decisions with a calculator and no education. Advocate.
I was diagnosed with lymphoma in my spleen yesterday. I was also not getting the proper care from my Doctor's and several emergency room visits. Finally a Doctor who actually cared, dug deeper and put all the pieces together. I'm mad so many Doctors basically blew me off but, morbid or not, am happy to finally find what's wrong with me.
What were your symptoms?
Praying for you that chemo therapy is successful for you! I had non Hodgkin’s lymphoma stage IV in 1980 had CHOP chemo therapy and I’m 62 now! Unfortunately I was diagnosed with Cholangiocarcinoma April 10, 2023 not related to lymphoma! Prognosis isn’t good they couldn’t get all the margins! I am going to do radiation therapy and start an oral chemo post radiation to slow the progression and give me more quality time hopefully with my family! Praying for you the treatment for lymphoma is very promising God bless you 🙏
I know how you feel. Just went through a year of bad advise and misdiagnoses Still going through so much and still don't know what's wrong. Thanks for your video.
All these symptoms are exactly the same as the autoimmune disease Sarcoidosis. I have this. By needle biopsy of my enlarged lymph node the result came back as lymphoma. It has happened before. Eventually I had a surgical biopsy of the lymph node and the results were Sarcoidosis.
God bless you and hope that you recover soon. You are beautiful and strong.
You are your own best advocate. Sadly it may come when we are at are weakest but don't give up. Wonderful that you will now continue your journey with your family and friends, peace and health. I had a few Dr's who were upset with me when I brought my journal with my symptoms and questions , as my memory was being affected by the extreme fatigue but I also have a team of gems.
OMG your so amazing. So sorry for what you have been through and are going through. Praying your strength will see you through this and for the best of health for the future
That trainee doctor sounds. So good 👍 and spoke a lot of sense x
Your situation is not unusual in terms of doctor indifference and them being rushed. I had a PCP tell me to look toward the East every morning to assuage my grief of losing my husband. I found a new doctor. Still your situation was dire and you waited a long time to be diagnosed. My heart goes out to you. You provided a succinct, compelling presentation of what you went through. I hope you continue to be healthy.
The apology from the GP would never have happened in the USA… too many lawsuits- can’t admit culpability. I’m glad she got that and she finally got well. ❤
Tbh id rather see the trainees fresh outta school and determined to make a difference. Sometimes I think the older docs get to overwhelm and in set ways
Thank you so much. I need to hear this. ❤
That is exactly what my dad had. Large B cell diffuse non-hodgkins lymphoma. He had it twice. He was in remission for about 7 years, so that was good. I stayed with him 24 hours per day for his last 10 months.
I am so grateful for your story on youtube. It is so important for us to advocate for ourselves. Much love...
Thanks so much for sharing your story, I find it interesting that it takes so long for doctors to reach a diagnosis. I’ve experienced this so many times that I hesitate in going to see my doctor just to hear those dreaded words, “well looks everything’s normal”, when you know it’s not! By the way, your clothes are beautiful 🌹
I was done to me!! Even though I kept telling them something was wrong they failed me. My liver doctor said I had a low level of iron every time I saw her. She said tell your gp to do a battery of blood test. It took her 2 different times of seeing her. Finally I raised my voice to her and she said ok. I have multiple myeloma... we all really have to advocate for ourselves. Speak up, yell if you have to!!
Great blow by blow of your journey I remember all the feel’s like it was yesterday, I was stage four non hodgkins when I was diagnosed 2020 a year virtually of chemo and all that entails went into remission then five months later on one of my routine three monthly checkups and bloods my oncologist said your bloods look great all ok but I had a very sore back and expressed my concern to him he offered a pain medication script but I said no I think there’s something not right so eventually he sent me for a scan WELL. the cancer was back in four places so when you know your body you have to advocate and make yourself heard never take no for an answer I had a stem cell transplant in November 2022 after three months of intense chemo still recovering mainly lack of energy so I want to stress to you who are still fighting the fight to stay positive and make yourself heard nobody knows your body like you …. Hope you are well and continue to be so 💕
I pray you are surrounded by love. ❤
So well spoken. Thank you!
Sorry you had to go through this I’m trying to get diagnosed now and finding the doctors so arrogant and complacent it’s so upsetting a doc said to me the other day your digging too deep and I said I am I’ll and trying to find out the cause so I can treat it So upsetting !!!! Stay well ❤🌈🙏
I don't know about anybody else but here in the states you got to bring a bag lunch snacks drinks you going to be there awhile so if you got in and out there that's just awesome praying for you always
Thank you for sharing your touching story. I’ve had a few different symptoms for a couple of years, and my primary care in the words of another dr. “is blowing you off”.
I have tests coming up, I’m going to be sure to write down the random symptoms and try to get help.
God bless you 🙏✝️💕
I’m so sorry this has happened and I’m praying for you❤ Doctors don’t look at people holistically and it’s so sad.
I’m so sorry you were misdiagnosed and pushed aside for so long. I think that experienced doctors seem to sometimes lose touch with why they became doctors in the first place. They stop trying to connect the dots and really narrow down what is ailing a person, even when blood and imaging tests point to something being wrong. I saw a doctor a few months ago for chest pain and they ruled out cardiac and blood clot issues in my lungs, but when I looked at my blood test results, it was obvious that I had an infection as my inflammation markers were abnormal. That was not mentioned at all when I was spoken to about my diagnosis. I took myself to urgent care the next day and was diagnosed with flu A and B simultaneously. I told the doctor about my diagnosis and she apologized. Absolutely a classic case of having to advocate for oneself. I hope you get well soon 💗
Thank you for sharing your journey. I think you are an amazingly strong woman in so many respects. Your forgiveness to the medical profession is admirable. Yet so necessary for you. I feel many people who will watch this will push for more instead of accepting. Bless you going forward.....
You are such an inspiration and such a delightful person. Thank you for sharing your story.
I currently have a brain tumor, a nodule on my lung that grew so slowly they stopped watching it, and a nodule on my thyroid that grows about .1 mm every 2 months. And they told me I just have an ulcer, but they have done nothing to actually confirm I have an ulcer
Terrible news for you gp, has lots to answer for please keep on at them good luck
Sorry, let me clarify, I have a prolactinoma which is a pituitary tumor.
@@nicolayoung7973 I have been keeping on them for years, I have gone from a US size 30 on my birthday in march last year, and then by December of last year I was a size 20.
Yes it's me GP don't doing nothing.i get my in going to proved we need do all itself
I am so sorry it took you so long to get diagnosed. Hope you're well Leanne ❤
This title and story is almost identical to mine. I was a full time carer for my mother who was also a misdiagnosed stage 4 cancer patient. I developed my cough in 2017 and thought it would go away like the “100 day cough”. I went to a lung specialist in 2020, for “extensive scans and tests”. They concluded, it may be asthma. They gave me a Cortisone puffer to make it better. It did nothing. I went back to the same Lung specialist 6 months later and ask to have a camera put down my lungs to investigate further. He said nothing was notable except I had a “possible yeast infection” at the back of my tongue. He said it must just be asthma. I ask whether he took a biopsy of my tongue’s infection, so as to be adamant that it wasn’t the more serious fungus that causes lung and then brain problems. I had to send him the medical literature on it. This was unfortunately the common story. I had to figure out for myself what the problem was. Even after requesting a biopsy on a small lump on the back of my neck and extensive blood work, I was told two things by my doctor. He said my extensive blood work showed I was normal and healthy and the biopsy was inconclusive. I demanded a referral to my mother’s oncologist. At first my doctor thought it wasn’t necessary. I explained to him that my mother successfully sued her doctor for negligence due to not giving her the relevant medical referral. He then gave me a referral. My mother’s Oncologist never dealt in half measures. He did extensive tests including a bone marrow sample. He confirmed what I had suspected. I have stage 4 Follicular lymphoma. He immediately booked me in for Chemotherapy and immunotherapy. I ask if Car T-Cell therapy was available. Unfortunately being 60 years old meant I didn’t qualify under the government health system. It’s discretionary after you use the less effective treatments for years. The unfortunate part of Chemotherapy is, its side effects in the long run will leave you so vulnerable that the cancer won’t kill you, a common cold or stomach bug will. That’s how my mother’s life ended.
If anyone has a spare $500k, I can get the Car T-Cell therapy.
I feel your pain. I went through almost the exact same dismissal when I went to my GP saying I wasn't feeling well. I was sent for multi blood tests and it was revealed I had diabetes. For 2 years I was sent from one specialist to another told I had type 2 diabetes, then a rare formula of type 1 diabetes and then type 3n diabetes? Thyroid problems, gallbladder attacks, and also developed neuropathy in my feet. Doctors told my this was due to my own fault for not controlling my blood sugar! All while they were punching stints into my pancreas. 4 stints eventually , not to mention a random colonoscopy! All the time being told that it was NOT CANCER! I would have to get my blood sugar down to qualify for gallbladder removal. Finally sent to the doctor to schedule gallbladder removal and he wanted me to see one more Dr. , I sighed and went to the next appointment and this God send of a Dr. and man, changed my life in 10 minutes. He told me I had pancreatic cancer and needed surgery immediately. 1 week later I had whipple surgery and two years later I am still alive, and no chemo. I will not say it has not had its pains and problems, but I have time with my family and friends and even made a 3 month trip to Italy ! Thank you to God and Dr. S for my life.❤
Your story breaks my heart and similar to my own of 3 years! You’re such a beautiful brave lady and I send you prayers and hope for the best outcome!
I to was misdiagnosed probably for years and got so sick I was passing out all the time and had lost 30 pounds in a month and my sister and niece demanded my Dr put me in hospital at once. Within days I was diagnosed B cell lymphoma and it was stage 3b. Chemo started immediately and since you have to take so many steroids with chemo and I’m diabetic type 2, my blood sugar was over 800 and they sent me to er. I’m in remission now, 4 years
I went through a similar journey as you. I knew for about 8 years and I kept being prescribed antibiotics and antidepressants. It wasn't until my tumors were big enough for the staff at my hernia doctor's office to find with a sonogram. It was only after that that my non-hodgkin's lymphoma was diagnosed. It really does feel like you are going crazy. Cannabis kept me mostly sane through much of it. I still have a year of chemo to go through and so far so good. Stay strong.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
You are such a delightful person. Hugs and prayers
My sister gyn kept ignoring her for up to a year. She went to ER and told her she has cancer. I didn't know she was ill. I went to see her and 3 days later she died. I looked into this guy. He has so many lawsuits. Malpractice. Had i known she was having issues I would have helped her. He's being sued.
She is so beautiful ❤
Last month February I walked into the bathroom and noticed blood all over my lips. I walked back into the bedroom and saw all this dry blood on my pillow. I coughed into my hand more blood plus a blood clot came up. Went to the ER right away. They ran tests, scans. Everything came back normal. My GP said just keep an eye on things and if it happens again we will send you to a urologist. So here it is March 11th and still have no idea why that happened to me.
Scary could have been an ulcer or type of sore that burst in your mouth hopefully was nothing too serious if it hasn’t happened again
A urologist? Time to change your doctor...
I saw several doctors, & they all concurred that the black & blue on my ankle that was not going away for over a year was "nothing ". FINALLY, a Dr decided to do a biopsy. Outcome, lymphoma. I suggest if your gut is telling you something isn't right, DON'T give up until a Dr takes you seriously!
I've had palpable lymph nodes in the left side of my head and neck for 6 months. I have marked hypertrophy of my adenoids bilaterally, and the left side nodes are 8-9mm, just below the size criteria to be considered "pathologically enlarged". CBC is normal, but I'm tired all the time, I lost 10 extra pounds after my last two babies. I'm down to 94 pounds. My skin is itchy on and off, and some nights I sweat a lot and wake up with wet skin. My doctor says I just have allergies because I was getting left sided headaches too. His answer to me is to take Flonase and 2 other allergy medications and come back in a month 🙄 I don't want to fight the system anymore. God help my 6 young children if this turns out to be something serious later down the road.
@@nicole8307left sided headaches do NOT mean allergies! One sided headaches mean migraines. Find another Dr. It may take a few before you find someone that hears you but stay proactive. Something is definitely off with you. Keep listening to your body.
Exactly my diagnosis!! "Diffuse large B-cell non-hodgkins lymphoma." Mine was under my sternum, wrapped around my neck, so i was basically being strangled slowly, so it was beyond coughing- it was suffocation
Leanne im sorry you had to go through this i pray tou will be in full remissions in jexus mame be strong
You are intelligent and courageous, many patients, especially women, are not paid much attention, when they complain about symptoms, that could be very important, in diagnosis of their issues, best wishes to you.
Your story is a bit like mine. You have given the best message I have yet seen and that I can think of for others who will begin this kind of journey too.
So well explained.
I'm so sorry for your experience, Leanne. I'm also sorry for anyone else going through a similar thing.
I had a rare uterine cancer in 2019, which standard blood tests didn't highlight. I had a major operation and with awful complications i.e. anaphylaxis and a huge hemorrhage. My bowel then wouldn't work, despite the hospital trying everything. That was excruciating. I have a large vertical scar on my abdomen, which was unitially very neat but a few hours after the nurse removed the staples, I was in the bathroom and my stomach just burst open, spurting blood everywhere. It was like a scene from a horror movie and I was petrified and screaming. Unfortunately, all this trauma led to me suffering horrific PTSD which just crept up on me and totally took over my life for a while. The day after I was discharged from hospital, i was rushed back in an ambulance, as I couldn't breath. The PTSD was very severe for a time. I just sat trembling for weeks, couldn't eat, sleep or talk to anyone, including my partner, who was wonderful. I eventually recovered but the whole thing had such a profound effect, that it broke my partner and I apart. I think that this partly relates to the fact that I too am a glass half full person and always made an effort to look good and got back to work pretty quickly (too quickly) after everything.
I am now having dreadful problems with horrendous fatigue, which led to a diagnosis of CFS/ME. It's utterly debilitating but in top of this I am also unwell, now, with swollen lymph nodes in my neck. I do sweat profusely but have done since my op in 2019, so can't be sure of a direct link between that and my glands. I too have been back to my GP several times feeling unwell (wiped out) several times for quite a while i.e. over a year. My last visit was yesterday and I have to go back next week for blood tests, which I have had taken so many times already. Like Leanne, when I had Cancer in 2019, the standard blood tests just highlighted raised inflammation markers and my illness was attributed to a possible infection somewhere. The same reasoning can be stated for swollen glands (lymph nodes, too), although I know I don't have an infection and knew that the first time round.
My issue is that whilst all these return visits to the GP are going on and my illness isn't dealt with, I have to take time off work and am on the verge of a warning for absence. I am 53 years old and have never had a warning in my life. When this happens, if I then have to take more time off, I can then lose my job. I am so proactive about my health but don't know what more I can do. For the past few weeks I have been bed bound for most of the time, apart from a few hours each day on the sofa. My glands are really painful now. There's other symptoms such as itching (no rash), an awful headache and arm pain but I'm just here not quite knowing what to do.
Fingers crossed for a positive outcome.
Thoughts are with anyone else struggling.
What a wonderful thing for that doctor to apologize. I have been misdiagnosed so many times and have learned to fight for myself. It doesn’t always work. One doctor told me I was crazy.
What a jerk never go back to him ! He's not a good Dr. !
I am so sorry to hear that you had to go through this. It’s unacceptable that you sought medical help and they never could tell what was going on. It took a student to take you and your symptoms seriously .
I too had B-cell non Hodgkin lymphoma. MRI picked up cancer and mass in spine. In in 20 2017. 5 bone biopsies done .
R- Chop started with
Radiation. In remission now
You are a beautiful person inside and out!!
Thank you for sharing your story
It’s good he admitted it and apologized. We all unfortunately make mistakes in the medical profession, I have made a couple being an RN that I will NEVER forget. We are imperfect humans and some of the errors are from inexperience, fatigue or ignorance, or imcompetence…or as you say, being so busy we don’t have time to slow down and notice critical pieces of info.. I am sure your medical person won’t forget the mistake made on you, he is now looking at the enlarged spleens etc., as important concern.
I'm so sorry this happened to you. Sadly dr's dismiss a lot of things way too often. They are trained to look for horses..... and they miss the Zebra amongst the heard of horses. It has happened to me as well for 29 years with my autoimmune disease and chronic pain. Everything was explained away, I was gas lit my physicians everywhere I went, dismissed, told it was all in my head, etc, etc, etc. And as another commenter said, here in the US they will never apologize or admit they had made a mistake.
Welcome to autoimmune hell, we all need to get off at the next stop cuz it's a horrible thing Tobe tying to get help for. Advocate for you, cuz no one else is going to.
i’m in a similar boat. In feel like doctors always look for the most likely explanation, but that doesn’t work anymore when all the more likely explanations are exhausted, yet you still know something isn’t quite right. Finding the right specialist is a huge pain when your symptoms are broad and not specific. My doctor at least gives me a referral if I ask.
If every doctor could admit what your original doctor admitted this would be a much better world with less severe diagnoses. Doctor's egos are a big issue and they just don't listen to what a patient is telling them. Patients know when something isn't right. Always get a second, 3rd ....opinion if you feel you are being dismissed. Thank goodness you were finally validated and received the correct diagnosis. So glad for you and your family. You likely saved many lives through this whole process. Your original doctor won't be so nonchalant with others, and pursue persistent symptoms with further testing. COVID not only caused many deaths because of the disease itself. It also killed many others without a COVID diagnosis due to the extreme lengths of time they had to wait for diagnoses, treatments, and surgeries of other diseases like cancer. Take care of yourself and may you have a blessed journey for the next 1/3rd of your life.
Thank you for sharing your wisdom. What a journey!