What Was Growing In Her Body Was Said To Not Exist...
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- Опубликовано: 13 май 2024
- Patient KC by Joanna Ferbrache, Cardiologist by Bryan Assata, Gynecologist by Star M
Emergency Physician by Kazia Steele, Medical Oncologist by Eric Wolfgang Nelson
Review (and KC's medical oncologist): Dr Pavlos Msaouel
Production Assistants: Erin Goodenough, Nick Brown
KC's RUclips Channel ► @katiekickscancer_kidney
Chromophobe and Oncocytic Tumor Alliance: kidneycoa.org/
National Institute of Health, Katie Coleman: ccr.cancer.gov/news/article/a...
Katie received her second opinion and treatment at MD Anderson Cancer Center and her surgery was done at the National Cancer Institute, where 2 other confirmed metastatic oncocytoma cases are documented. Her case report to publish in a medical journal is currently pending.
Big Data Paradox
@HemeReview in-depth with Dr Msaouel ► • The More Data You Have...
Cancer Patient Speaks Candidly With Her Physician ► • Kidney Cancer Patient ...
@BigEmus Behind The Scenes ► • What Was Growing In He...
Katie's Story (playlist) ► • Katie's Story
Japanese Translation and Dub: Chihaya Hanai @rasha1m833
Japanese Voice KC: Kasumi Seki
Spanish Translation and Dub: Cenzontle Voices, Inc CDMX
Spanish Narration: Jerry Meza
Spanish Voice KC: Jahel Morga
Spanish Review: Dr Araceli Morga Vera
Portuguese Translation and Dub: Cenzontle Voices, Inc CDMX
Portuguese Translation: Zyanya Ponce
Portuguese Narration: Santiago Álvarez
Portuguese Voice KC: Gabriela Pellicia
Portuguese Review: Lenin Sagrero
Vietnamese translation and subtitles by Cao Nguyên
Music by R Prince, performed by Chubbyemu
Additional Music by @Lifeformed ► lifeformed.bandcamp.com
Some Images by Getty Images
Timestamps:
0:00 A Woman 💁♀️ Had A Headache Lasting 3 Days
0:05 KC is a 28 year old woman ☝️ presenting 🚑 to the emergency room
0:30 At the Urgent Care
0:58 Over the next few months
1:18 Abdominal pain
2:06 The anticipation of an imaging 👀 modality
3:03 Back in the 🚑 emergency room
4:12 A phenomenon of nature
5:06 An implication of heterogeneity
5:43 The mitochondria is the powerhouse of the cell, but something's 😳 wrong
6:41 Searching online cannot give you important contextual metadata
7:59 How do you know your plan is the one for you?
9:14 A powerful clinical reasoning tool
10:53 If you hear hooves think horses 🐴 not 🦓 zebras, but play telephone and people may hear ????
12:32 Presenting☝️ to the emergency 🚑 room
13:04 This is called 'treatment resistance'
These cases are patients who I, or my colleagues have seen. They are de-identified and many instances have been presented in more depth in an academic setting. These videos are not individual medical advice and are for general educational purposes only. I do not give medical advice over the internet.
References:
Metastatic renal oncocytoma. www.ncbi.nlm.nih.gov/pmc/arti...
Renal oncocytoma, yet another tumour that does not fit in the dualistic benign/malignant paradigm? www.ncbi.nlm.nih.gov/pmc/arti...
Oncocytoma and metastatic potential: myth or reality? link.springer.com/article/10....
Renal oncocytoma: clinicopathological study of 166 patients. J Urogenital Pathol 1991141-52.
Classification of tumours. Pathology and genetics of tumours of the urinary system and male genital organs. Lyon: IARC Press, 2004
Oncocytoma. www.pathologyoutlines.com/top...
Chromophobe Kidney Cancer. www.pathologyoutlines.com/top...
Immunohistochemical analysis for cytokeratin 7, KIT, and PAX2: value in the differential diagnosis of chromophobe cell carcinoma.
pubmed.ncbi.nlm.nih.gov/17210...
The Big Data Paradox in Clinical Practice. www.tandfonline.com/doi/full/...
A Causal Framework for Making Individualized Treatment Decisions in Oncology. www.mdpi.com/2072-6694/14/16/...
There is Individualized Treatment. Why Not Individualized Inference? arxiv.org/abs/1510.08539
Causal inference and the data-fusion problem. www.pnas.org/doi/10.1073/pnas... 
Наука
RUclips has added KC's charity and the Fundraiser tag is on this video! Thank you so much for any contribution, and for watching this video! I also added Spanish, Portuguese, and Japanese dubs and subs, Chinese subs, and 8k on here 😁
𝐇𝐢
Worst channel ever
Bones.
The mitochondria is the powerhouse of the cell.
Thank you so much 🙏🏼🤧
Everything is anxiety when you’re a “young healthy woman” until you’re a middle aged nearly dead woman and they whisper “oops”. Personal experience.
I can relate. Happens too often. Once is too many times!
as a currently young woman who had to fight for years for my conditions to be recognised, this is sadly so true. especially when you have a history of poor mental health like me. one example was i have ptsd and a gastroenterologist said i was constipated because “how can i expect to let go of things down there if i don’t let go of things in my head?” nope. i have a partially paralysed GI tract and it would take at least 7 days for me to digest my food without my medication, even now it’s still a few days. LISTEN TO PEOPLE WHEN THEY SAY SOMETHING IS WRONG!
It's so annoying how they bounced her around. None of the doctors could agree on any one consensus. It would only have taken ONE of them to have caught this, but none of them did. They just kept telling her "it's fine" or "this person will handle it."
well no, when my dad was in his late 30s he kept having stress related pain all over his body and the doctors just kept telling him to work on his core but like a year after it started they found bones floating around in his blood, from when he broke his foot.
7 years from onset of symptoms until my diagnosis. And only because I pushed for it. Drs need to take their afab patients much more seriously.
I know how this patient feels. I was 32 when a doctor told me I was a hypocondriac. A month later I was diagnosed with high blood pressure and asthma. A month after that I was diagnosed with stage 1 kidney cancer and had to get kidney removed. Listen to your body and advocate for yourself.
Have you sued the 1st doctor?
@@pau8727 why should he? All symptoms point to a heart/blood pressure?
He can't sue a doctor doing it's job, unless the doctor is lying/sabotaging which i don:t think so.
i had stage 2 kidney cancer (they said the tumor was almost the size of a softball). my left kidney was removed. i had a lot of odd symptoms caused by the tumor
Doctors are mostly idiots regurgitating books they only half remember. Patients often make better doctors.
@@pau8727 What? lol. You do realize it is possible to be a hypochondriac and diagnosed with cancer at the same time?
It's insane to me that doctors would dismiss a 165 bpm heart rate and chronic hypertension like that. Even on their own, those two symptoms are dangerous
165 from anxiety is very rare.
Unbelievable, that's the rate you would see with AFib.
And as the doctor said, the heart reacts to something being wrong by pumping harder and faster. While I was ill, they put me on heart medicine - which I'd never needed. When I began to get better, my BP went low enough to cause dizzy spells, once in front of a nurse. I removed myself from the heart pills and informed the doctor, who advised AGAINST it! I decided that one is clueless and fired her.
First thing I thought of was Pheochromocytoma, perhaps looking for that would have found her issues sooner ( although, I admit, that's a zebra).
Yea verily 😎
When you’re female, medical gaslighting is the norm. So infuriating. As an RN with 45 yrs of experience, I still find it necessary to all but diagnose myself, request specific tests & demand my own specialist referrals. It it why I’m still alive. Never expect doctors to have the answers. They’re just the gate you have to get through until you find the right diagnoses. (Sad)
Yes so true.
Trust me its not only females.
@@cj.wijtmansno one said it was she’s saying it’s more common for women (which it is)
@@michael-um1rr nonsense
As someone sick for 16 years i too have to be my own dr at times. The medical field is more concerned w disfiguring our kids w transitional surgeries than actually help ppl
This happened to me in 2021. My cardiologist said "well, you're a woman so emotions can impact your anxiety levels." I refused to put up with that (plus, I work in mental health and know anxiety attacks). I went to a gastroenterologist and gynecologist who then found a mass on my liver, endometrial cancer and that my utetus was about to rupture due to fibroids in the organ walls. 6 hour surgery later + treatment and I survived. So I always tell people NOT to accept dismissive doctors and my gynecologist told me that quality of life should always be the doctor's #1 focus.
i hope you are doing well now ❤
@@lucywing8490 thank you!! Much better!!! Lol I had been dealing with the pain so long I didn't know I had a bleeding ulcer. My gastro found it after my surgery. I am lucky to have a great medical team... after dumping those who dismissed me.
Wow! Good job standing up for yourself. Glad to hear you're okay. Have you been cancer free since?
@@Wateryoufightingfor i understand. i have chronic pain so it can be hard to notice new pains. you just kind of pass them off as the usual pain! i’m so glad you’ve got a great team. everyone deserves to be listened to and treated with the best care possible.
Hes still right, you’re a woman so emotions can impact your anxiety levels
I feel like “Woman is ignored by doctor after doctor for years” would be a more accurate title for this one.
Become a doctor and change the narrative, please. Certain populations are commonly marginalized, including women, minorities, children, elderly, etc. With that said, you have a better chance of hitting the lottery than having her condition. The odds of anyone seeing this similar presentation in practice is so low, it's ridiculous. There were flags that may have warranted other clinical decisions. However, that's with the benefit of hindsight and this well-stated presentation. Talking to patients and getting an accurate history within the timing of a short patient encounter isn't always likely to give you the needed information for the diagnosis. Further, she was referred to multiple specialists throughout that time, so I don't think saying she was ignored is accurate.
@@cameronno6039 it's always easy to play armchair quarterback years later. Not to mention we have to diagnose this extremely rare presentation in a 10 minute visit
@@RedEmpire36it’s not about only this super rare disease, it’s about the systemic ignoring of pain symptoms in women.
They are doing that to me rn about my concussion
@@cameronno6039But it took how many before somebody bothered to look?
Having 5 people blow you off is not care, just revenue producing.
Same thing happened to me.... no one believed i had cancer because I was only 17. After 5 years of being prescribed iron supplements and psychologists, doctor #9 found the cancer which was quite advanced by that time. At 22 I started two years of treatment and lost my ability to have children. I was told that if the first doctor had properly diagnosed me it could have been cured in 15 minutes.
Curious how was it a problem on your iron? I have iron levels that refuse to rise as well :(
In any case really glad you were diagnosed... Sorry to hear though
@@nutrinogirl456 well.... I had my period for 2 years straight. I needed iron because of the loss of blood. You'd think that would be a clue that something was wrong but.... no.
@@yugenknows740 2 years straight and they didn't try to find out!!!! I'm so sorry
That makes me mad! Doctors all act like young people can’t have serious problems. It took over 10 years for me to get doctors to believe how much pain I’m in and to get all these diagnostic tests done to prove I’m in so much pain that I have many things wrong and permanent disability. I was seen as a hypochondriac by friends and others. When I get these test results and doctors saying I can’t work and then approve me for disability it was like vindication because I could finally say see I told you I’m very sick and not faking or making it up.
Nice job medical community 🙄
stomach pain for women is always diagnosed as "just a period". I bled for over a month straight once and was having such bad abdominal pain I'd be toppled over on the floor, writhing in pain. The hospital said it was just my period flowing extra heavy and to come back if I'd soaked an overnight pad in an hour. I told them that had already BEEN happening. They told me there was nothing they could do and sent me home. They wouldn't even write a note for me to miss work so I also lost my job.
So sorry!! How is life for you now?
That's horrific. How are you doing?
They would've had you come back just to tell you they can't do anything anyway smh
Idiots. As long as they can just get you out of the ER they are done with you. 😢 6:47
"Anxiety", is a blanket diagnosis for "I don't feel like doing my job right now; That will be this many $$$'s..." Even worse, they wont even perscribe Zanax to calm you down enough to figure out what's actually wrong on your own..."Go to med school for 4 years, then, you come back and tell us what was actually wrong...We will argue with your findings, and diagnose "anxiety", anyway..."
Respect to the woman, She literally fought for her life while the entire Healthcare industry were showing her mixed, dumb signals! MAD RESPECT!
They're paid to care and yet they'll just ignore so many people, I think people know when something is wrong with their body
@@mrcattoonist4766 most don’t
Profits over patients
@@JBroMCMXCI this is literally the opposite problem of profit over patients. It would be profitable in medicine to send every anxious person with endometriosis or a bowel disorder through lengthy, very expensive, repetitive testing to “rule out” rare cases of cancer. They specifically wanted to avoid putting her through testing and expensive procedures, which kept delaying the diagnosis she needed. By trying to save the patient time and money, they almost killed her.
Dead patients make you a whole lot less money than living ones. Think before you speak.
@@lexinicole4317 An ultrasound is not an expensive thing to have done.
It's nice to see that the guy that swallowed the AirPod got his life together and became a Doctor. Good for him!
He is so inspirational!
hahahaaaaa LOVE THIS COMMENT!
LOL! I didn’t realize until you mentioned it
And he survived being poisoned by his wife. Love that guy.
@@screamingmimi90 Didn't he OD on caffeine, too? Seriously, I like seeing this guy reappear.
They ignored my sisters symptoms for years. Even when she pointed out she had 9 out of 10 symptoms of ovarian cancer she was told she was too young and refused to check it out. If they had she would probably be alive today
That's terrible. I'm so sorry. Xx
I'm so sorry for your loss.
im so sorry that happened and i pray for your sister that she rests in peace, and to bring peace into your heart and your family💞
🤍
I so sorry.
I complained for years about horrible pain and cycles. By the time someone listened I had 5 tumors the size of softballs and had to have a complete hysterectomy. Women are ignored and told they have anxiety or you are a pain med seeker. Truly sad. Thank God mine were benign.
Horrific. Im so sorry.
@@Mink_Tracks thank you 😊
I refuse opioids bc it makes it where you do too much on your injury. Then you hurt more later. Just not worth it.
Glad to see she recovered. Cant even imagine how it would feel to have such a rare and dangerous disease. May it never happen again to anyone.
I don't think I'd have made it anywhere near as far as she did. I'd probably nope the heck off the mortal coil with such a bleak outlook on potential recovery.
Here I am with a week long headache. 😑 I did not need to see this video
The only way to help prevent weird rare genetic diseases is for everyone with them to get genetically tested/sequenced, and everyone without them that have early symptoms to get tested/sequenced. Unfortunately, people have a lot of weird reasons for not going through this process. "I don't want my privacy invaded by genetic sequencing" and "they'll make money off of me unfairly if I get genetic sequenced". But - the benefit is potentially life saving to yourself or others.
(It also takes a lot of researcher hours and headaches, to figure out the causation / correlation of genes in rare diseases. So, it's not an instant process and takes years.)
(Also, I don't just mean 23andme, I mean full whole genome sequencing. 23andme does not show gene variants and is more like "reading tea leaves" to understand SNP correlations.)
The sheer frustration with experts she must have gone through. Man would that be taxing.
I know, right. The disease would have been found if the doctors have not been so dismissive. I am so happy that she made a full recovery.
Ohhhh man, seeing the actual patient at the end fully recovered was a relief; and now she advocates for those with these variety of diseases with her foundation. What an amazing person, and what an awesome lesson this video was. This is probably one of those rare youtube collabs that brings positive, wholesome awareness and education.
Thank you to both for collaborating into making this extremely informative video!
Yeah fully, just short of one kidney and some liver 💁🏻♂️
@@RizZRizZ-liver grows back! Neat huh? ✌️☺️ Human body is fascinating
@@RizZRizZ- that she survived at all is amazing. This is just more proof most medical practitioners are very bright.
And scare the crap out of me.
Spoilers! Just kidding saw this after. But as someone who suffers with crohns, I know my body, like you all know your bodies, if unsure push hard.
My mother was really sick. She was a young, healthy woman. The doctor told her it was “ her nerves”
She got sicker and sicker until she got jaundice. Then my Dad took her to a large teaching hospital near us. They discovered that she had a diseased gall bladder. She could have died.
you thought a headache was just head pain you thought wrong it can mean worse things some time
Same thing happened with my mom, and that was just one of her many issues that doctors have hemmed and hawed over. Now she is in a care facility pretty much permanently due to severe strokes and nurses not paying attention and her getting up and trying to walk and falling giving herself a severe concussion, when she has a stint in her head for fluid build up, pocket of fluid that goes out of her spinal cord, and several now fused bones in her spine. My whole childhood was her in the ER or hospital for many things, and in the mental ward for more issues.
As a zebra (EDS) I spent about 20 years trying to get a diagnosis. Every time they ruled out the 'horses' I was told to go home. The attempt to diagnose me stopped. PLEASE believe your patients when they tell you something is wrong.
They don't care...Due to the stringent requirements, Dr's are always in short supply...Most Dr's #1 goal is to prevent malpractice claims; "Can't claim malpractice if I refuse to diagnose it..."
i have eds too! luckily for me, it only took about 12 years of searching for me to get diagnosed (yes, i realize how insane that statement sounds). i was lucky to have severe enough migraines (and to be persistent enough to get medical professionals to listen to a 14-year-old) that doctors couldn’t ignore my case. unfortunately in that time i developed severe chronic conditions i probably wouldn’t have had otherwise. turns out my whole maternal line has most likely had heds since at least the late 1800s. go figure.
wishing you the best in getting treatments. good on you for standing your ground
I was searching for answers about my constant low back pain (for 16 years) when I was told I have plain lumbar arachnoiditis, and to get screened by genetics for EDS. I was 37 when I got diagnosed with hEDS. In the following few years (I'm 41 now), I also got diagnosed with a chiari I malformation, craniocervical instability, cervicogenic migraines, a misaligned C2 vertebra, CPTSD, and Ramsay Hunt Syndrome.
Being a zebra with this many "stripes" is not fun. I had to quit my job, and I can't even do my hobbies much anymore. Doctors don't listen. Applying for SSDI at this "young" age is a frustrating, difficult process. I have a handicapped parking placard, but get dirty looks when I use it. I forget words, get confused, and get angry. I feel like a burden on my family.
A rule that was taught to me by Psychiatrist in medschool was "Never say it's the mind until you rule out everything in the body" and i've been living with that principle in my practice ever since.
YES this.
Thank you. ❤
Thank you ❤
Yes, i was sent to a psychiatrist and he was really good, he told my GP that my stomach pains could be one of these things he mentioned. One was my gall bladder.,ihad my gall bladder out with stones, no more pain..
where can I send a gift box to your professor?
Its crazy how doctor dismissed her serious issues as "anxiety" when she said how much pain she has
All too common, sadly. This happens every single day to 1000's of people. It's horrible
doctors dismiss womens' problems a lot like that.
Aren’t you the guy I replied to?
They're doing that to me. I've had chronic headaches since November. In fact I'm sitting here with a headache right now. They don't go away.
Strongly suggest demanding a referral to an ENT, and a neurologist, and don't stop until it happens.
Your head is important, dont let it hurt that much and long if you can help.
Good luck!!
For years i was told my problems were mental health related.... 4 months ago a 4CM (classified as a "giant") brain tumor was discovered only after i advocated for myself and not buying the idea that something was simply my panic disorder. 3 weeks ago another tumor was found on my kidney, so ya this video hits home a bit.
Oh, man... I am so sorry to hear that. I hope you have good support around you.
I hope you recover.
God bless you man, you got this! Never stop advocating for yourself, never stop fighting!
Please tell me youre still alive
My mother saw doctors because she found her fine motor skills were deteriorating. The doctors told her she needed a holiday I.e. was suffering anxiety. It was actually the first stages of Parkinson’s Disease. But it’s not only women. My father was put on all sorts of weird diets by doctors to help his problems when he actually had a bowel cancer growing inside him.
@@acmhfmggru In my mother’s case, early intervention would have helped and she would also not have felt she was being ‘silly’. It was when they moved to another state and saw different doctors that the truth became known and treatment began. In my father’s case, the crap he put up with ensured that the cancer had grown too significantly for his life to be saved. How dare anybody suggest that doctors have the right to withhold truth from their patients.
My aunts mother was told she had anxiety bc she was having stomach pain and put on Prozac. It continued for almost three years until she finally was diagnosed with colon cancer. She lasted six months before she passed away after that. Always advocate for yourself, if you think something is wrong don’t accept the first answer you’re given.
im so sorry for your loss. i really hope the medical field stops deeming women as being "too emotional" or instantly assuming its a mental problem without looking into things first. this happens way too often :(
If the doctor hears you out then you can take the first visit seriously.
I’m so very sorry. 😢
Joe Tippens and dog dewormer. Fenbendazol, curcumin, Vitamin E and CBD oil.
♥️✝️♥️
@@KellyKelly-qd7myThis is the most brain-dead comment I’ve ever read.
This happened to me. But it was Uterine cancer. I hate that I got a run around for 3 years myself. I can empathize with this diagnosis.
thanks for sharing. hope you are well!!
Did they just assume it was fibroids?
Ok
The fact that the medical system is set up this way is such a crime. You basically have to teach yourself medicine to protect yourself from the "experts".
That's why you should protect yourself and be safe.. eat only healthy food
Idiots think they can live anyhow and when they're sick some magicians will totally eradicate the result of their bad lifestyle
Which is the big main reason so few people trusted medical professionals during the pandemic. Far too many died because they learned from first hand experience how untrustworthy doctors are allowed to be.
Truth
yep. and then if you do know some medical stuff and ask your dr, then you’ve been online too much and are just making your “anxiety” worse.
We have death care not health care.
This story is exactly what happened to my mum, except she was older than 29! My mum died 10 days after finally getting a diagnosis, where we were told the symptoms were because the cancer had spread to the brain, yet she was dismissed time and time again. One dr even told her to stop wasting their time and not to come back unless she had broken a bone. By that time she was in insidious amount of pain, continously vomiting and barely conscious, but still they told her it was anxiety about an upcoming kidney transplant she was due to get.
I'm so sorry you and she had to live through that
@g.cosper8306 thank you, it's still hard sometimes 😔
This might be sue-able
:( sorry
@sangaperezgimenez6717 I agree and I wanted to pursue it, but the rest of my family didn't. They told her it was her kidneys although her kidney function was improving
Pain in general seems to be completely disregarded by so many doctors, but especially for women. Women complaining about experiencing pain are basically told a polite version of "You're just imagining things." My mother suffered from severe migraine for several decades, and multiple doctors straight up told her she is "imagining the pain".
What ended up being the issue was *constant* and *severe* muscle tension, which was helped by myofascial trigger point massage. To this day, I think the doctors who told her she is imagining the pain should face disciplinary action.
That’s so messed up, even if it’s not dangerous she had horrible pain that was treatable and she lived with it for too long. I’d be so mad.
@@goldenboy3154 It is messed up, indeed. The number of treatments she tried was so long. Some therapists even told her that she shouldn't have to jump through all these hoops, but that's just our healthcare system. Ironically, the one treatment that does help her consistently and has allowed her to stay 99% migraine free the past years does not get subsidized through healthcare, because it's not a recognized therapy. But screw the money, after decades of relentless pain, you'd pay any amount of money to be pain free consistently.
It's completely disregarded for men too... we're just supposed to suck it up and we're not real men if we mention it...
LOL You think men get the red carpet? They tell us to go die quietly like a man. 😂😂😂
Women really are dismissed for problems, especially surrounding pain or anything to do with or even remotely related to your lady parts. I suffer from migraines and put off seeking help for years because I was always dismissed for every problem I've ever had. I just figured, what doctor is going to listen to me about my head hurting and dealt with them the best way I could. Finally I had enough of the pain after almost crashing on my way home from work due to not being able to see or think correctly due to the extreme pain in my head and then laying on my bathroom floor for hours vomiting. (Go to the ER if this happens to you, don't be like me). I went to a new doctor, she was young, compassionate and took me seriously. Got on meds and have been mostly migraine free (2-3 a month and very diminished in strength) and go weeks without headaches. I was living with daily headaches.
I can't imagine going back and it's a big fear of mine. I actually overfill my medication on purpose, so I can stockpile them. I need significantly less than I request to fill because I fear being cut off from my rescue meds and these aren't even addictive or controlled substances. That's just what happens when you're constantly dismissed for medical problems.
When I had just turned 12, I started to go downhill. I was constantly sick and covered in bruises and basically bleeding all the time. I was really sick, constantly suffering from tonsillitis, colds, really pale, exhausted all the time, unable to eat. My mum and dad made fun of me for saying I was ill, so I didn’t take any time off. I was still cycling to school and going to my swim club. One day at school I felt very hot, and couldn’t stand and had to keep sitting down in woodwork class. I felt lightheaded and started retching, so I got sent to the nurses office and sent home.. the next day I was back. My mum would yell at me for not riding my bike, for needing to sit down and rest every 30 seconds of walking, for not eating enough, for being lazy. Then my aunt died of pneumonia and I had chest pains, so I went to the doctors. He told me I was being over dramatic and wanted time off school.
After 2 and a half months of my rapid decline, school called my parents and told them to take me to the doctors. I was told I was probably slightly anemic and needed iron supplements, and to monitor me to make sure I didn’t have anorexia or an eating disorder, and that beyond that I was fine We brought some, I tried them- then the next day my mum saw a lump on my neck. I went to a different doctor and she told me i probably had cancer and needed bloods done. We were gonna do that the next day.
Well the doctor called the hospital that night and we were up the hospital that evening. I did have cancer; leukaemia.
Having my own parents yell at me and make fun of me whilst I was rapidly declining and feeling like I was being over dramatic with how sick I was…. Fucking sucked. Having the first two doctors dismiss how I’ll I was and physically looked…. Fucking sucked.
It's a sad fact that having parents who don't listen to, and emotionally invalidate, neglect, or abuse you, makes a child learn to both doubt themselves and have anxiety/overreacting tendencies. You learn from such awful people that you either need to make a big deal out of things to get any notice taken, or to not bother because it will only fall on deaf ears, and maybe they are right and whatever is bothering you really isn't important.
I'm so sorry you had to go through this, and I hope you are doing better now / get better.
I am so sorry you went thru all this! I hope you are doing better now! Mentally & physically,
I’m so glad you’re okay.
i would simply never talk to my parents again. i’m so so sorry that happened to you and i hope you’re doing better now ❤
Hope they learned to treat a soul after that
Physical problems alone can be hell but i just don't want to imagine Combined with psychological pressure too
Back in 2007, I had a very painful experience that lead me to an ER, where I learned that I had gallstones. I was advised to avoid any and all fatty foods as this could trigger further stone attacks. Two years later, I had a very painful stone attack that lasted for days. When I turned up at the ER, I gave a urine sample that was shit-brown. I told the doctor that it was pancreatitis, caused by a stone attack. He laughed me off, saying that there are lots of reasons for brown urine and "tummy aches" (I shit you not, that was what he called my pain). After hours of suffering this pain in a bed in a section of the ER that was under construction and had no AC, the doctor came back with this sheepish "Hyuk, who'da known" attitude and said it was Pancreatitis, insisting that there was no reason to believe it was but it just so happened to be. I would have died if I hadn't pressed the matter. Trust doctors, but not blindly. You must press on when you know something is wrong and they tell you that there isn't.
O😮
don't trust any dr , they are not dr. vet for animal they are doctors, tru.
How did they test you for pancreatitis, if you don't mind sharing?
@@deedeeseecee9294 They detected extremely elevated levels of the enzymes that the Pancreas creates in my blood. Basically, it was churning out the stuff used to break down proteins, fats, and other organic molecules much faster than normal. They did a contrast-dye scan to confirm that it was enlarged. After two weeks of eating and drinking nothing, getting all my water and calories from a bag, it had shrunk back down and they were able to go in and take out my gall bladder
How did you know you had pancreatitis?
I’m a senior citizen. A month ago I became dizzy, disoriented, confused and had to call an ambulance. At the ER I was tested for stroke, head trauma, cardiac etc. After a few hours I felt much like myself and the doctors didn’t understand why, because I hadn’t had any treatment. Nothing, I realized, but fluids. I diagnosed my own problem- dehydration.
Yes and if you are dehydrated, all those things they mentioned are likely to occur
when a patient says "worst pain ive ever felt" they usually mean it
yeah for fucks sake, we need doctors to be more than book memorizers in this world
and if we’re rating it at an 11 out of 10, we mean it too. listen to us!
@@lucywing8490 little bit different when you give them a number for the rating system, its always an 11/10 lmao
@@gnatdagnat as someone who does problem solving for living (but on computers), I was like WTF , why are you ignoring symptoms , you have to do root cause analysis, something IS wrong. you're getting "error messages".
you can't just dismiss everything as stress , stress don't cause strong pain.
once I ended up in the hospital because of stress literally, didn't hurt, but my pressure was high.
You can't say correlation is causation, high pressure might be stress, but it can be anything, you have to LOOK to know.
ahhhhhhhh
@@Gin132456 i wouldn’t say so. i’ve seen people who’ve been in serious car accidents, have broken bones etc. that rate their pain about a 5/6. we should listen to people when they talk about how much pain they’re in regardless of if they use words or numbers.
i don’t like the pain rating scale at all tbh. it’s just not a great system in my opinion.
All of her case sounded like an absolute nightmare to go through, it was VERY relieving to hear at the end that she survived and made a full recovery. ❤
Forreal. The rabbit hole of this one was deep! 1. "Maybe anxiety attack" -oof. 2. "Possibly endo" - ouch! 3. "Physical lumps" - uh oh.. 4. "Tumors on liver" - 😳😳😳 5. "Ultra rare form of kidney cancer metastasis" - stahp. 6. "Previously unknown blood condition" - STAAHP 7. "Not enough blood supply in height of covid" - bruh...
@@andrekz9138 Aight you can't convince me bad luck doesn't exist after seeing this video
And through all of it, her friends were the reason she got the operation because they donated blood ❤
@@e-money5085 , not just her friends, but all kinds of people was my impression
I agree, not a good time, 0/10 recommend. I'm very grateful to be in the regained "full" function club now though. Thank you for the support. - KC (Katie Coleman)
I am also a zebra. A zebra is anyone with what is considered a "rare" disorder or disease. I put it to the medical community that these conditions are NOT rare, simply under diagnosed and missed because Dr's are only looking for horses. Many of us zebras die waiting for treatment and diagnosis because of this practice
@@acmhfmggruread the room, dude
I was also a zebra but luckily for me my dr listened to me I had a pheocromopsytoma it was removed along with my right adrenal gland I felt better almost immediately 😀
Once upon a time long ago... I had a physician repeat that fantasy to me ... hoofbeats -> think horses, not zebras. I stopped him flat in his place by replying -> "Why the hell would you do that?" He looked stunned and puzzled. Before he could reply I continued .... "Within ten miles there isn't a single horse. There are however several thousand cows, nearly as many pigs, hundreds of dear and dozens of Elk." "Why on earth would you follow such inane guidance?"
That was enough for him to now hear me. It was not enough to change his thinking, or the thinking of another. In the end I diagnosed and then successfully treated myself for subacute bacterial endocarditis. Doing that was not easy and carried extra dangers as I didn't have access or support in getting the tests and supplies I needed. I had to bend the rules all out if shape. And 30 years later I finally had my diagnosis confirmed by a rather incredulous ER doc who could confirm from changes in my heart geometry that I had indeed had SBE all those decades before. And had it gone untreated, it likely would have killed me.
Our medical systems are based on probabilities. Those are reflected in the algorithms physicians use, and that insurance companies mandate. They assure that 15% of patients are chronically misdiagnosed. As a result we each at times must be our own physicians, or at the least demand proper diagnostics. We must be the squeaky wheel demanding attention. that cannot be ignored.
Today, people suffering long COVID, and the other lingering impacts of COVID, including clotting issues, brain fog and brain injury, and many other issues are among those who must fight for care.
So too are those suffering latent hormone related cancers from blue LED light exposure, as well as rapid eye damage, macular degeneration, tinnitus, optical migraines, migraines, and so much more. This whole complex of issues and symptoms caused by overexposure to intense blue light (50 times too intense), and high frequency light flicker (100 or 120 hz) is utterly unknown to physicians, and only barely known to researchers. Very soon the rise in rates of breast, prostate, GI, and rectal cancers will not be able to be overlooked. Sadly, it is likely for them to take years to understand the cause - a cause everywhere around everyone - LED light.
My sister had a cancer that "does not escape the abdomen" make it into her lymph nodes. When they tell you it doesn't spread, they mean they haven't seen it spread, not that it can't or won't.
Cancer that doesn’t escape the abdomen doesn’t exist, whoever said that is an absolute poo brain. If melanoma/skin cancer can get into the brain a cancer in the abdomen can 100% end up outside the abdomen
I knew it was cancer when you mentioned the weight loss. I am so thankful for my radiologist ordering a biopsy of my lump in my breast, despite only being 24--it turned out to be grade 3 invasive ductal carcinoma. I am almost finished with chemotherapy.
This is just negligent.
💝💝💝
I wish you the very best with your health.
Undiagnosed type 1 diabetes can do this too
@@hicknopunk but doesn’t it usually have other symptoms like constant thirst + peeing? Just rapid weight loss made me think of cancer too.
I'm rooting for you!!
I know that patient privacy absolutely matters when doing these case studies, but it's such a breath of fresh air to see a real-life face associated with the case under review. This was a wild ride.
I know right, and it reminds us that it are real people we're talking about. Not just medical stories.
My volunteer firefighter dad went to his doctor for two years with sinus and lung symptoms. He pulled out his prescription pad every time and wrote a prescription for antibiotics for a sinus infection. He went for a second opinion and they gave him a chest x-ray. He had lung cancer, and it was too late. It had spread thanks to his PCP. Both of my parents died from medical care.
I always go to specialists instead of GP.
Sorry:(
Jesus
Sorry to hear about your parents. It happens way too often.
I had lung flukes for years and it caused many problems. It took me coughing up bloody eggs until they believed that I was having a major medical issue. “ We don’t see that a lot here”
That is as close to sorry I got.
some people are unable to say sorry. Some are taught not to so they won't get sued. An 'im sorry' would solve a lot of problems, but no one wants to admit they made a mistake. If you make a mistake, pay for it. Integrity is what is lacking.
Something similar happened to me in 2021. I had an extremely severe prolonged migraine - by far the worst pain i've ever felt. I felt like my head was gonna explode, so I went into a walk-in clinic. The doctor quite literally ridiculed me for bothering to come in for "a little headache" and basically told be that I was just being dramatic - when I started to cry he told me "not to get hysterical". I went home in (angry) tears and about 6 hours later, I had my first ever seizure - a grand mal. The subsequent MRI revealed I also have 3 lesions of severe demyelination in the white matter of my left prefrontal cortex - but I have no idea what this means for me because surprise surprise - the neurologist I saw that diagnosed this was also an unhelpful asshole. How sad and unsurprising it is that these comments are flooded with comments exactly like mine - young woman with stories of being completely neglected by medical professionals.
Sorry you had to go through that. I hope you are doing better now
take your turmeric and black pepper. turmeric is one of the few herbs that can bypass the blood to brain barrier. it will keep you healthy. the black pepper increases bioavailbility by 2000 percent for the turmeric. ive been thru tons of shit as well. turmeric is a wonderful herb if you know how to use it
That doctor was an idiot. What you had was what they call a thunderclap headache, and it is a sign of a medical emergency. Especially the feeling like your head could explode part.
This treating of pacients is very common in my country. And you have to wait hours even if you have an appointment.
You should definitely sue that doctor for negligence!
My mother passed away in 2019 from metastatic breast/lung cancer, and the one thing she constantly stressed to me was how excruciating it was for her to explain symptoms and changes in her condition to different care providers, only to be met with dismissal. She was a lecturer in Communications at USF Tampa during the last 6 years of her life, and ended up shifting her thesis focus towards, specifically, the nature of PATIENT and CARE PROVIDER communications. There's no question that her work had an impact... a few days before she passed away, she received her PhD diploma and i was absolutely blown away by the number of people that came out to celebrate her work and her life.
Wow that's fascinating. You should be proud of her!
@@zertyuz I am, she was remarkable. Demonstrated firsthand how to take control of your life and become who you always envisioned
It’s wonderful that she was able to achieve what she wanted to achieve in her life and to impact so many people. May her memory be a blessing.
My condolences..She's a diligent, brilliant, and considerate woman. Her work resonates with me and many others. The modern dream since the 90s is a commodity of Healthcare that has comradery and consistency. We can get there soon.
I'm so glad you include the parts where the doctors are dismissive or nonchalant about serious things in your videos. There needs to be more awareness of doctors being careless so that more people will know to speak up so it doesn't cost them their life.
It’s especially important because chubbyemu is definitely frequented by med students. Showing them what to do is just as important as showing them not what to do
They often have that reaction to anything we may know more about. Sometimes we know our bodies better and nobody listens. Why has money became more important than a human life? We do have some very special drs that are willing to help us but few and far between them. I appreciate my family dr.
This is why I have sever complex PTSD against the medical system and all those who work in it. 90% of my medical problems were caused by their negligence and mal-practice. I am terrified of doctors. Especially their narcissistic attitudes. I hate them, I hate them so much. They have utterly destroyed my life more then all abusive persons I've known put together.
I am a senior male,, have had the same crap from doctors. After 2 years of saying I had tummy pains they eventually found out I had kidney failure so I spent a month in Intensive care. Then 2 months of dialisis. Eventually I was sent home by myself which should never have happened. Similar experience a few years before, fronted ER feeling very poor and really not quite lucid. After 11 hours a registrar came, looked at the same chest X ray and told me I had pnuemonia which I had guessed. Given an injection and prescription and sent home by myself.
Several other similar stories
@@ldnwholesale8552 my stories are countless, the malpractice started when I was still in my mothers womb. to this day I suffer a host of ailments and daily dialysis that is all linked to the hurt the doctors did to me. I trust none of them, none. I never will. I personally struggle with loathing hatred and have to force myself to be civil when I have appointments. I literally have ptsd and have to constantly calm myself when at the hospital or clinics. I hate them I truely and bitterly hate them all.
My twin couldn't keep food down for over a year, and got under 100 lbs. Everyone said it was psychosomatic until a 4th year resident found her diagnosis: gastroparesis. It's life long, she still struggles to digest, but she is alive and well. All thanks to finally finding a doctor that refused to associate her prolonged and severe symptoms as psychological.
Did they tell her the cause?
Is she on Domperidone? You can't get it in the US, but you can get it from Canada or the UK. I get mine from a pharmacy in Florida that gets it from other countries. It's the only thing that has treated my Gastroparesis with some success.
@@aspirecan4829 she is on at least three medications, and the only two I am sure of are Omeprazole and Ondansetron. I'll definitely ask her. Anything helps
@@aspirecan4829 I live in Florida, my 21 year old son has seen 17 doctors, and is just taking meds to get from day to day. He can't work or go back to school. I will go anywhere in Florida to help my son. He's had the two above. He's taking sucralfate and two more, but what is it. It's making him anxious, not the other way around.
@aspirecan4829 I have gastricparisis and Dr has tried every medication out there, at no avail. How can I get my hands on this dop... med? Any suggestions?
My girlfriend had a similar story in regards to the runaround she got before receiving a diagnosis.
She was 25 years old and having problems breathing for months; chronic cough, feeling like something was pressing against her lungs, feeling like mucus was caught in them. It got to the point that she had to sleep sitting up because she couldnt breathe. She lost 30 lbs, would fall asleep randomly throughout the day due to fatigue and had an overwhelming feeling something was wrong. Her PCP wrote it off as a sinus infection then chronic bronchitis and then anxiety/panic attacks. She went to the ER twice in between these visits and although they did chest X-rays they determined nothing was wrong and also suggested anxiety/panic attacks. She got a referral to a psych....
Cut to her collapsing at work, going to a different ER, getting a chest x-ray which shows her left lung is completely filled with fluid, follow up after draining it shows that theres a 14cm tumor pressing on her heart and lungs. Cut to her getting diagnosed with DLBCL which was stage 4 at this point because it had spread from her lymph nodes and formed a tumor (a big one). She had been seen by doctors on many occasions as the symptoms got worse but they had missed it, writing her off because she was a young, otherwise healthy woman.
She also had real problems with anxiety outside of this, and im sure that could have played a part in the doctors she had seen writing her off.
Her PCP dropped the ball more than anyone, he never sent her for any kind of imaging after multiple visits for the same, worsening problem.
She was in treatment for almost 2 years, ended up getting CAR-T cell therapy to get into remission in 2019. She passed away in feb 2021, not from cancer, she was still in remission. RIP Vanessa ❤
I'm so sorry. That is horrying. Women need to be taken seriously in healthcare.
Just to confirm, was your girlfriend from nearby the American-Mexican border?
Please accept my condolences to you and her family 😞🌹❤️🇹🇹
@@jamesmccomb9525 This comment has a vibe I'm not comfortable with.
@@Jerebees-Digital-Space so if someone is near the border you get bad vibes?
Sadly, this story was very familiar. My father had cancer but was sent to a psychiatrist because, obviously, he must have been imagining his abdominal pain. He died at 56.
Something similar happen to my mother. For years her symptoms were put down as "her nerves". By the time she found a doctor that knew what he was doing, one kidney was half functioning and the other only a quarter functioning. Very soon after diagnosis she had complete kidney failure and heart failure. She had to go on a salt free diet and be on dialysis for the rest of her life, because the heart failure she was ineligible for a transplant. She died at age 55. Too many women are diagnosed incorrectly or have their concerns shrugged off. Makes me wonder how many would still be alive and well if they had been taken seriously, sooner.
Can totally relate. Told the neurologist I was afraid I was going to end up in a wheelchair because my legs would randomly stop functioning as 27 year old female. He told me that it wasn't his concern. I fought with the hospital to get a new neurologist for 6 months. The new neurologist told me that I probably had a hidden trauma and put me on anti anxiety medication. Newsflash they didn't work!! But I did get an MRI which showed disc bulging and spinal tumor.
Lazy apathetic doctors who refuse to do their job make my blood boil. They have no business being around any patients. I’m really sorry you went through that, I hope you’re doing better now.
I hope you had a great recovery; it must have been hard. Same exact thing happened to me. I was told by doctors that I was anxious and that I just didn’t want to exercise - essentially calling me lazy. My mom made me advocate for myself and I ended up diagnosed with stage III astrocytoma. It was a grueling treatment plan and I had multiple reoccurrences, but I’m so glad to still be here and living my best life. I’m a paraplegic, but I’ve never let it stop me from enjoying life.
I think doctors, even female ones, are way too quick to dismiss every complaint as period related or psychosomatic, and I’m not sure why.
I’m very sorry that happened to you; I’ve had something similar happen to me, and I’m going to go ahead and say what needs to be said: This happens because we don’t demand excellence from our universities and medical schools anymore. Idiots who would have been weeded out in the past are now making it to graduation and beyond, and they’re the ones who don’t know what to investigate, so they tell you that it’s all in your head, or they refer you to a colleague to get you off their plate.
I would have thought that legs randomly ceasing to function would immediatly flag up a nerve compression issue. I have a disc bulge / hernia and I work hard to manage numbness in my right leg. The first thing the NHS doctors suspected was a herniated disc, which was confirmed by MRI imaging. As for your spinal tumor, did you get that treated and how are you?
@@taticatnineland You nailed it! That is exactly what they are doing when they feel they are incompetent. Most of them have zero compassion, cannot comprehend the symptoms or their severity, and no logical skills to investigate when faced with something that doesn't fit in their top 10 patterns. Most are not even up to date in their own specialty. Dr House doesn't exist in reality. No wonder so many patients realize they are on their own and have to use Google to diagnose. I really hope they start using AI for medical diagnosis - it may potentially be much better than most doctors nowadays.
I can relate to dismissive drs. When I was about 22yo, I woke up with severe abdominal pain that just kept getting worse. I stood up and passed out, so had my dad take me to the nearest urgent care mainly because they had advanced imaging there and the closest er was super far away.
I get there and the Dr dismissed it as “period cramps” no matter how many times I told him that I wasn’t on my period.
I demanded a CT, he kept arguing it was a waste of money but because I was insistent he agreed. They made me wait 6 hours for a CT only to find “a catastrophic amount of free fluid” in my abdomen, which they believed to be blood.
One heli ride later, I’m at an ER getting an ultrasound which confirmed the fluid and a large mass on my right ovary.
Went in for surgery and I had an ovarian cyst that ruptured my ovarian artery (which comes right off the aorta). I was bleeding to death and needed immediate repair and removal of my right ovary.
Imagine if I just went home and slept it off like the Dr suggested? I’d be dead.
Moral of the story, you MUST be your own advocate in medicine. It could cost you your life
My goodness. You scared me. I was diagnosed with an ovarian cyst many years ago in my third world country. I had it removed but only now have any understanding of all the possible complications.
@@janicejames3005. my girlfriend and I went on a trip with my aunt and a bunch of Family cause she got Married. So we all went and paid for rooms and had a fun vacation.
So we get back home, and we’re laying down. She was complaining the night before about her abdomen hurting, but it wasn’t TOO bad.
She had been complaining abt abdominal pain for a few weeks at this point and she said it usually went away after a while and the doctor said she was fine when she went a few weeks ago. Now at home later in the day, I try to lay my hand on her stomach in bed. No pressure. Jus the weight of my hand. She IMMEDIATELY breaks into tears.
She was trying to put off the hospital, cause she doesn’t like going for one and two because she thought it would jus go away (she grew up being told this by her doctor AND mother, and she was at the hospital two weeks before this and they said it was nothing).
So I made her go again, and as this was during Covid, and her mother wanted to be there cause I told her how bad it was and I had business to handle anyway, I let her stay (only one visitor allowed).
I get a call a few hours later, she needs to go in for emergency surgery and is getting a helicopter ride to another hospital, if I didn’t make her come
When she did, the “massive cyst” “most likely
Would’ve ruptured”, and she could’ve either bled out or BEST case lost her ovaries, which still suffered damage.
Well, at least suing the first doctor probably paid the surgery fees right?
holy shit, im so sorry you had to go through that. i hope youre doing better now. its really terrible how women get their concerns dismissed so often by doctors. ive never once heard of a man getting dismissed when bringing up a problem they were experiencing, but with women, its always chalked up to period cramps, anxiety, or overreacting.
Oh my god I had a 8 pound ovarian cyst when I was 16 that somehow didn't rupture I'm so lucky that didn't happen to me or I'd be dead very quickly
I've been told it was anxiety so many times. When I was about 30 I was finally diagnosed with hbp and when I found out more about the disease I realized I probably should've been dead years ago. The most response I got from doctors was that I was told to take as many ibuprofen as I needed. In high school I was going through several bottles a week thinking this was normal bc that's what the doctor told me to do.
Too much Ibuprofen over time is not good...
I'm glad you're not dead in spite of the doctors and the ibuprofen. A high school kid should not have been gulping down so much of that stuff. I don't suppose they thought at that age you could have hbp but you can if it's genetic.
I can relate, my sister, myself, my mom, and my daughter. It took over 2 years for them to find and explore, with many ER visits only to be sent home. My sister had kidney cancer which was removed, but she passed at 59 after years of complications. I lost part of my liver from lupus liver, which they had never seen, internal bleeding and stones removed. Long story.
My sister is 29 and a colorectal cancer patient. She went to CPAP for mental health related concerns and ended up learning she had cancer - it’s been 9 months and to this day we express gratitude about her ER providers admitting her and keeping her hospitalized until they confirmed it was cancer. I cannot cannot cannot fathom how she, and I as her caretaker would have navigated this during the pandemic. My sister needed so many blood transfusions and is still needing to visit medical facilities everyday. My heart breaks to know Casey went so long with her discomfort. Thank you for sharing this and advocating about this plight
how exactly did she learn she had cancer for that??
@@rex198 they run labs on you bro
Is there another type of CPAP?
It's absolutely 1000% correct that you have to be your own best advocate. What an incredible survivor she is, her bravery and willingness to fight to live, and survive such a rare cancer is so inspirational. Good for her, so happy there was a good ending to this one and to actually see the patient at the end was very uplifting. Thank you for bringing us this story.
I couldn't agree more - advocating for yourself is crucial. It can be feel unnatural and uncomfortable at times but is so important. Also, thank you for your kind words in this comment. It really means a lot to me - KC (Katie Coleman)
@katiekickscancer_kidney Oh, I am so happy you are ok!! So often in these videos the story is told after the person has passed away. But I am so happy that the end of this is happy and you are doing well!! Such a great start to my day.
And thank you for encouraging people to advocate for themselves. It's so very important and yet so hard to do!
Good thing we're not raising a generation of kids to believe that it's their fundamental right to be happy and healthy, and not responsible for their actions, despite the hardships that come with life. That would be horrible.
I went to a cardiologist and was told “you’re young so it should be fine”. I was told by doctors that I couldn’t be autistic because I made eye contact. I was told by a GP that I couldn’t have endometriosis because I was young and wasn’t actively screaming (I wasn’t on my period at the time and when I got it, I was screaming). All of them were wrong. Medical misogyny is real. We’re all “hysterical” the moment we bring up a problem.
Yep I was also told I wasn't autistic because I could make eye contact! After a breakdown they decided to send me to a specialised clinic after which I was diagnosed with.... ASD. Recently I looked into therapy files from my childhood and the people around me have been asking for me to be checked for ASD since I was 10 years old.
Well getting diagnosed as autistic does what besides get you government money? If you think you have it, apparently high functioning. Assessment reason here is you asked if you were autistic and had the ability to argue it. I can count on my hand how many actual high functioning autistic people I have met or known. Hint, 10 fingers still left to count with. It's that uncommon to find a high functioning type who also has physical signs of it. I remember when autism was narrow definition. Like PTSD getting massively expanded by PhD papers, so to was autism type breakdowns and widely applied. This was done with a matter of months to a year not a decade of careful study to be sure they were not invented. Fun fact recent paper came out claiming 40-60% possibility of US population is autistic, their reasoning was slight mannerisms. Other claims was so many were very good at certain tasks.
@@1014p for me an ASD diagnosis was helpful because I can get accommodations at school.
Would love if you could tell me where to find that paper that claims so much of the population is autistic based on the 'expanded criteria' because that does sound wild.
And what would be 'physical signs' of autism? I'm supposedly high functioning by your standards because I can hold a conversation and advocate for myself, but I have visible 'stereotypical behaviours'/'stims' and especially in times of high stress.
I'm so glad that things worked out for her, I hope she lives a long life. What irks me though, is when I hear stories like this where someone keeps trying to get answers and is told things like 'it's your period.' People know when their bodies are not acting normal and doctors need to listen better.
I know we cannot expect doctors to know everything immediately or all the right courses of action, but it really is scary how often some of them will get things terribly wrong or dismiss a patient's concerns as "anxiety."
Also, props to the absolute legends who donated blood for her surgery.
One thing you need to always check is your blood type. Always find out how rare it is. Turned out I have the second rarest blood in the world. Only 2% of the population in the world has it.
So while I struggled through leukemia without the use of chemo because the insurance company knew they would kill me if they gave chemotherapy as no one with my blood type organic combination had survived using chemo. This was a blessing in disguise as it's saved my life long enough to find a way around the problem.
When you have B- blood type & mixed DNA, no chemo nor transfusions which is common to help you feel better and strengthen your blood. Nobody with this blood type can donate or should donate any blood unless it's for their own need or family member. You can't receive blood from a universal donor. When nurses are telling you so sorry your bone marrow transplant failed but you haven't had one yet you know you're in trouble but your oncologist has been so chipper. He hasn't talked about giving you a blood transfusion when other people you know have had them you begin to wonder what's the problem here? But no one has told you anything about your blood type or the problem with your DNA.
Then just by a fluke you end up getting a new OBGYN at your HMO. Yearly pap needs to be done. At the appointment you meet this very elderly man and he said by the look on your face that you're not going to be very happy him doing the smear and he says oh no my nurses do all of that. I'm here to see if I can help you let's see, hmmm ah yes I'm pretty sure and also your blood work over the last few years that you just have a very severe sensitivity to a lot of the food you're eating. Due to the fact that you're eating food that does not relate to your DNA you're having a problem with your weight you've been struggling to get it down no matter what you do. I can tell the last 15 years and I want you to know that you shouldn't feel guilty some of these doctors are completely off the mark. Well I took advantage of your blood draws and had your DNA run in a very deep dive. I mean the kind we do when we are doing DNA research on cadavers, ancient DNA etc. It gives a little better explanation then you know your commercial DNA would. I hope you don't mind but I'm a DNA specialist I worked for the CDC studying obesity for over 30 years and this is what I can tell you. At that point I was all ears and anxiety was gone. This was the first person in my life since age 10 who treated me like I was a human being and not some person who couldn't control their eating habits. I was adopted in my 5 ft 99 pound adopted mother treated me like I was some horrible monster. Because I had developed fully by age 11. I looked like Marilyn Monroe. The bombshell not the innocent redhead and I did not try to look like I was born pretty and it just continue to grow into a very young adulthood. My parents had me raising my brother and sister by age 13 as well as fully responsible for the house and all the cares that come with basically being the hired housekeeper, nanny, nurse to an elderly person, nurse to a psychotic and sick adult, helper to the adult male who worked 6 days minimum a week as well as presenting a positive and socialites standing in the society that we were raised in upper middle class organizations and of course the school district. Before laws were passed even though the school knew that I was being extremely abused and so was my brother who was adopted with me at the same time we could not be removed from the home because our adoptive parents money bought their protection. Even when my PE teacher in 8th grade tried to shame the poor School principal in front of other students in the hallway of the school into having me removed for the damage to my back from a bOne thing you need to always check is your blood type. Always find out how rare it is. Turned out I have the second rarest blood in the world. Only 2% of the population in the world has it.
So while I struggled through leukemia without the use of chemo because the insurance company knew they would kill me if they gave chemotherapy as no one with my blood type organic combination had survived using chemo. This was a blessing in disguise as it's saved my life long enough to find a way around the problem.
When you have B- blood type & mixed DNA, no chemo nor transfusions which is common to help you feel better and strengthen your blood. Nobody with this blood type can donate or should donate any blood unless it's for their own need or family member. You can't receive blood from a universal donor. When nurses are telling you so sorry your bone marrow transplant failed but you haven't had one yet you know you're in trouble but your oncologist has been so chipper. He hasn't talked about giving you a blood transfusion when other people you know have had them you begin to wonder what's the problem here? But no one has told you anything about your blood type or the problem with your DNA.
It was a specialist in DNA research who saved my life . I went into remission without any chemotherapy and have been cancer-free since 2010.
Her being assured the colonoscopy would definitely find something in the RUQ, right under her ribs, really alarmed me, lol.
@@nathan7401 Lol they paid someone to take anatomy class for them.
They let her cancer become more advanced when a simple ultrasound would given them all the information they needed. Doctors love to dismiss patients with crackpot psychological diagnoses. Someone has high blood and a racing heart for a month? Suddenly her doctor is playing psychologist. But a real psychologist would have sent her to the ER.
that's why public healthcare is such an important thing
in most countries with public healthcare doctors are encouraged to do tests which the patient wont have to pay for but the goverment will
of course there are still doctors that refuse to do tests just because they dont like doing paperwork but they're much rarer than the ones that just want money
in the US where patients are completely responsible for paying doctors are discouraged from doing tests since there's a decent chance the patient wont be able to afford them anyways (this is worsened by how overinflated medical prices are in the US)
A 24 year old guy subscribed to this channel, this is how his brain got addicted….
Emu, meaning Emu, and emia, meaning presence in blood
☝️presenting to a chubbyemu video, intrigued
Congratulations, KC! Good to have you still with us! You are truly remarkable! 🙏
Aww it's so heartwarming to know ppl lined up to donate blood just for her. That's incredibly wholesome. ❤ I'm so glad she's healthy and thriving.
As someone with a rare lung disease that wasn't diagnosed until age 13, I appreciate the doctors who take patients seriously and help diagnose and treat those rare diseases. Because sometimes it really is a zebra. I'm very glad that she was able to get diagnosed in time to be treated and is now doing well.
I posted a comment earlier about something like this. Im getting investigated for epilepsy, but for the longest time they just thought it was anxiety, or a migraine disorder.
I definitely understand the ruling out of other issues, and for me my memory issues related to my disorder complicated treatment. But other times the healthcare system complicates things. Especially as you go between doctors. Or if you only see one kind of specialist, or something like a Physicians Assistant, or Nurse to treat conditions, or go through treatment as I did.
@@I_like_big_bombs Yes, I agree. The symptoms of my disease are present in many others, and most non specialists have never heard of it. So I understand why it's hard to get a diagnosis. They thought I had 'atypical asthma' for years, even though my peak flow readings were always fine and the asthma inhalers didn't seem to do anything.
At the same time, there were many times when I was not taken seriously. I went to the ER as a kid with a partial lung collapse, for example, but the doctors there accused me of faking it (they asked me at age 9 if I had a bad day at school). If the treatment isn't helping and the symptoms continue for long enough a good doctor would take the patient seriously and investigate other diagnoses. Even if the patient is a child.
@@desertrose0027 I had the same thing. My pediatrician at 14 or 15 said I was probably going through normal issues when I got extremely sick, or when I exhibited symptoms of extreme migraines, tiredness, and visual, olfactory, and auditory hallucinations. His dismissals seem silly now that I know I have memory loss after a seizure (with entire days being lost). Usually starting with paranoia, hallucinations (visual, olfactory, and auditory), deja-vu, loss of spatial awareness, then hit with staring spells, loss of speech, poor writing and spelling, then after a minute it becomes confusion, disorganized thoughts, dizziness, and tiredness.
Symptoms initially dismissed as anxiety.
@@I_like_big_bombs I'm so sorry. I'm sure that was very scary (and frustrating) for you. I'm glad that it now seems you're on a path to getting some answers, which is good.
This video is actually anger inducing. My sister, when she was in her early 20s was having a lot of health problems all at once. Every single doctor hand waved it away under similar pretenses. Emotions, or simple feminine issues. "Healthy young people don't have these problems" One doctor even had the gall to suggest the pain was all in her head. I wanted to slug the guy as hard as I could. She looked like she was dying to me sometimes, but they couldn't even be bothered to do tests on her before deciding they knew everything they needed to know to diagnose her. Some real shit doctors out there, for sure.
Hugs, I've been there and it's beyond frustrating. I was finally diagnosed with severe adenomyosis, that was not visible on laparoscopy, but was visible with good ultrasound machines. My uterus was to the point of, essentially, daily labor-like pain as it tried to expel itself. My other organs were shutting down from sheer exhaustion from three years of this level of pain coupled with chronic fatigue syndrome - oxycodone was literally keeping me alive. I was still told for far too long that there wasn't a physical source for my pain. I had to have a hysterectomy at 26.
I am so sorry to hear this... A friend of mine has had a massive lot of severe physical issues pretty much all his life and was originally told he might not become older than 16. He's in his 20's now, but has a massive ton of chronic issues to deal with and he simply can't find any even somewhat decent doctors who would even try listening to him where he lives.
doctors being "compassionate" is a myth. pre-meds are known for being hyper competitive ladder climbers. those are your future docs. These type As are going to rush you out the door whenever it suits them (i.e all of the time in docs office)
i dont understand why it's so hard to get a simple ultrasound in this medical system... meanwhile the dumbass doctors at my hospital gave me one because they thought i had PANCREATIC CANCER when i actually just had mono, wtf
I had a doc blow off my pain I found him one night in the parking lot and with a bat rearranged him
I had a similar instance. I was taken to the hospital and was deemed having a panic attack from the admitted nurse. My wife told her otherwise. She came running back saying it was an emergency because of the cavernous angioma I had. It was causing a shift in my brain.
Wow! As this story was unfolding, I was certain it was going to end badly. Casey is not only very lucky, but also extremely courageous to have endured such a scary ordeal. I would have been devastated getting a prognosis like that.
Medical student here. My heart goes out to KC. These kind of stories have further motivated and encouraged me to listen actively to all my patients and ensure to carry out all thorough investigations so these types of cases will not happen! No matter if you are a woman or a man, I will treat you with compassion and quality medicine.
Yes! Please do better than these corrrupt physicans telling people they have "anxiety" but actually have myocarditis or perimyocarditis a side effect from the jab
Make sure you listen actively to patients of color too. We are also affected by medical dismissal.
@@BassGal92 100%. I appreciate this comment and am sorry you have had these experiences.
I hope you have a wonderful career! It's great that you'll listen to patients and not dismiss their concerns no matter how many years of experience you'll have under your belt in the future. These ultra rare cases where you'll most likely be the only one that investigates, will probably be the main factor that saves a person's life :')
I'm so excited for the next generation growing up. You're going to do great things for this world. ❤
Hate it when doctor's keep dismissing real issues
Trying to save costs on some diagnostics like ultrasound or MRI. These might cost a few hundreds of dollars, but could save a person's life, or even just show a baseline for future problems.
In my state, you can get an MRI for $400. And I'm sure in some countries, it's "free".
@@fitybux4664 true. And if it's not the doctors it's the insurance companies doing the same thing
@@fitybux4664 I'm not to sure about that, because hospitals already charge a obscene about for things so I don't know if it's a money issue.
@@bigbird4481 probably insurance companies being greedy
Kidney cancer can be difficult to find. My late husband, who died from a congenital liver disease, felt his early because his spleen had been removed when he was 26. He was lucky. He was 41 when he was diagnosed, and died at age 67. KC, I am so happy to see you are also a survivor!
never had one of these stories make me cry but i was literally rubbing my hands nervously hoping this had a happy ending ❤ as a woman with arthritis, i can tell you i had to be aggressively assertive to make sure no one told me i wasnt suffering. u really do have to be your own advocate. if it doesnt sound right go get better ears to listen REALLY listen to your problem
Woman: Comes to the doctor with literally any problem
Doctor: mUsT bE uR pErIoD
I had to almost scream at my doctors. Turns out i have multiple sclerosis. My hearing loss, a rare symptom, wasn't just allergies after all
thanks so much for sharing. i hope you are getting the care you need now!
@@chubbyemuthank you 💚 doin ok now
My partner has MS, it's very easy to dismiss early symptoms as something else unfortunately. You really do have to literally scream at doctors to get proper treatment. I hope everything is going well, really
This is a perfect example of how people fall through the cracks. We should be doing better with all the money in this country.
You do such a great job breaking down all of these issues in easy to understand ways. My hats off to you.
I hope that every single one of her doctors was informed about how they misdiagnosed her cancer and put her life at risk. All they had to do was imaging and they would have seen something.
Over-imaging is also a real consequence. In her case, imaging was definitely valid, but he discussed horses for a reason. She had such a rare condition, it isn't her doctors' faults for missing it, necessarily. The only large red flag to me was the extremely abnormal resting heart rate. That screamed auto-immune or tumor to me. Then again, elsewhere, someone might say infection. To state "all they had to do was image" implies there was an obvious place to image. If this was sarcoidosis, we would be discussing lung. Carcinoid could be lung or abdomen. Thyroid would be neck. Neurologic masses would be neuro-axis (likely brain). Leukemia would be marrow, which labs would be the initial tip-off before you see abnormal bone findings. Thee point is, saying "image" without target does no good. If you image the wrong spot, you might be less inclined to image another later. These things always seem easy when all the details are known/ laid out, but hindsight is 20/20.
@@cameronno6039 yeah I don't blame them for not realizing it's cancer, but someone having debilitating pain every month isn't normal and that should have been actively looked into and attempted to resolve before the 2 year mark
@@pinkpink-kb6dl She was referred by her PCM to GI, GYN and cardiology. She saw Emergency med (they get imaging for the smallest of reasons). She got scoped by GI (upper or lower). Her workup was extensive; it just was not targeted at the right spot.
I would love to see her chart and know what was present and when. I wouldn't be surprised if she had imaging that was abnormal but missed as well.
As for her pain, fibromyalgia is a catch-all rheumatologic condition that causes debilitating, idiopathic pain. It's a diagnosis of exclusion that's diagnosed daily. It's never normal, but we often don't find a trigger. It's not the only painful, neurologic/ rheumatologic condition, but it's an example to show pain is bad for everyone but may not always help us clinically.
@@cameronno6039 But she kept having extreme abdominal pain so imaging would be warranted. Even if it was period related, it could have been endometriosis, ovarian cyst, or fibroids. High resting heart rate and unexplained rapid weight loss screams tumor or growth of some kind. All they needed to do was some kind of imaging first thing.
@ferretyluv It's easy to say in hindsight given the way this was laid out to us. However, the gastroenterologist didn't think so, nor did the ED docs/ providers. Given she had SO many providers, I am inclined to think things aren't as stated.
Also, her issue was renal. GYN will get pelvic ultrasound and renal won't be seen for the pelvic conditions you mentioned. The tachycardia is nonspecific, could be renal, cardiac or systemic. Cardiology was unable to diagnose her. I don't recall her weight loss. Saying, "get imaging" isn't useful unless you know where to image. Any of the pelvic conditions you mentioned aren't seen by the most likely order (pelvic ultrasound). A CT abdomen/ pelvis would have vs caught this. Pelvic MR may have too (likely on a scout image.. easy to miss). You aren't likely to get a PET/CT without focal concern or fever.
Seems to me she was an unfortunate circumstance.
That’s fantastic about her blood drive! I’m so glad she’s made a recovery and is out there advocating for others now!
I will never be able to fully express or repay my gratitude for all of the incredible strangers who stepped up for me with that blood drive. It brings tears to my eyes every time - KC (Katie Coleman)
@@katiekickscancer_kidney Hello Katie I am so glad you are doing fine 😁but i don't understand from the video did you make a full recovery? Are you taking any precaution measures still?
@@ReverseGuy I still have a stage iv cancer diagnosis in my chart (that doesn't go away) but my last set of scans came back as no evidence of disease.
We still watch me closely to keep an eye out for anything but I live a very full life now and live a better quality if live than I did before my diagnosis. Even after the surgery. I feel very lucky. I share on my channel as well as on other social platforms for more info too
@@katiekickscancer_kidney Good luck with everything, Katie! I hope the medical bills aren't too high from this :)
My mother has survived a very rare form of Kidney Cancer and in her journey it amazed me how little research and treatments there are for Kidney Cancer for one simple reason....by the time it is usually discovered it is already too late (late stage 4). There needs to be a LOT more research in this arena as underscored by this video
Is it about "think horses not zebras" or about dismissing female patients tho. There are tons of stories of women being dismissed with terrible pain. I feel so much for KC in this story when she was reffered from specialist to specialist instead one quick ultrasound. My experience was way less painful and dangerous - but it took years of pain before doctors really helped me.
As someone who has been dismissed from doctors for decades only to find I have a chronic illness, I am so happy Katie got heard she even more glad she's better. ❤
Thank you so much. The time I spent lost in the system, definitely made me feel for the chronic illness community. The first wave of emotion I was hit with when they told me in the ER was relief, because I felt like we finally had answers and someone believed me. The tears definitely came afterwards but there was a sense of relief in knowing we could put a name to it. I know many chronic illness patients end up in that cycle much longer than I was. I'm sorry that happened to you as well. - KC (Katie Coleman)
Why in the fuck is it so hard to get an EDS diagnosis
@@katiekickscancer_kidneyYes... the unknown is hard... if you don"/ know what it is, medically it is there is nothing you can do to get better, and it often leads to you not being believed, even questioning yourself. It all becomes so hard, the suffering goes on, often getting worse, and for some unfortunate person leads to long term morbidity, poverty, even death. Putting a name to a problem is validating, it usually means you are taken seriously. Having an explanation, sometimes even when the news is really bad can give back some control, and a treatment plan. If there is no treatment it at least helps you work out realistic goals and lifestyle changes. Being chronically ill, feeling like foctors aren't treating you seriously, continuing to decline, losing function can lead to depression kind of hopelessness, a lack of confidence, maybe even questioning your sanity... seeing yourself as the problem. At other times the frustration of how hard living becomes, and being dismissed leads to frustration, rage and disenchantment.
What is even worse is when it turns out to be a relatively common life threatening problem, that is dismissed without treatment because of bias of medical staff, even "not looking sick enough"
I am autistic, often when I have a medical problem I don't present typically. Maybe I have a low pain threshold (I don't think so), but because I deal with moderate to severe pain everyday, I have a high pain tolerance. When I am asked to rate my pain... my seven eight and nine seems to be more than most (kidneystones, perforated bowel, surgery I ranked at about 7 1/2). My 10 was a unexplained searing pulsating headache the felt like it sent electric shocks down my spine... I was in hospital being treated for cancer. Thankfully it only lasted about 30 minutes.
Maybe because I m autistic my appearance and body language may not typical. I can have problems expressing myself especially when I am really sick. I had bad headache, and gut pain and was given IV antibiotics in ER and sent home. A few days later I got a call to come back as my blood cultures showed I had bacteria growing in my blood. When I got there they wanted to send me home because I did not have a fever or look sick enough to be septic... I had to stand my ground and fight to get them to keep looking (I had been really sick the past few days). Turns out I was septic and had DVT. Been sent home after being rehydrated when I couldn't keep any food liquid or my medication (include anti-epilepsy drugs), came back again 3days later, same problem and dehydrated, got rehydrated and blood test and were going to send me home again saying they vould not fo anything more than what I could do for myself at home. Again had to stand my ground. My stomach was blocked and I needed surgery, which they saw when they finally did a CT scan... could not even pass a nasogastric tube into my stomach.
Had years of repeated severe period pain for years, which was largely dismissed by multiple doctors until one day shortly afyer being diagnosed with breast cancer as part of staging they did CT and other scans and saw a "mixed cyst". When they did surgery it was an endometrioma, snd I had endometriosis, multiple adhesions thicker than a finger. My female gynaecologist (3rd one I had seen), told me in a surprised voice. I had started fertility investigations that had not found a cause about five months earlier. I was angry, I mean I had all the symptoms,been seeing doctors for years about the worsening period, heavy periods clots, They just didn't believe my problem was serious enough to investigate.
The only times I have received prompt investigation was when my presentation was typical (eg kidney stones), which I told them was the same sort snd intensely of pain I had when I had a perforated bowel, but was not very agreviated or improved by movement or position.
I had brain fog with chemo that did not go away, even years later to the point I could no longer work in IT, and was a delivery driver. Doctors said it was depression and PTSD. I have had depression most of my life, and I knew it did not effect me the way I had become. 12 years later when I my life was falling apart snd I was suicidal they did cognitive testing which showed I had developed cognitive impairment, there was damage that doesn't show on scans. Now I am trying to get help because I have progressive problems with balance and coordination and cognition. But tests did not show anything to explain it, so now I am not believed.
I have been told I should be relieved because they have rules out any sinister cause of my symptoms, then fischarged without treatment. Noone wants bad health news... but living without any explanation for what is happening, not being believed or receiving any treatment destroys your life... a special kind of hell. Then receiving a bad diagnosis is good news, a relief, it is validating to finally be believed, and receive treatment that sometimes fixes or helps the problem. Being repeated dismissed by doctors when something feels very wrong to you and is really hard to try to live with eventually becomes traumatic. I have become very jaded, and somewhat hospital phobic.😢
our medical system is broken
@@SobrietyandSolace I’d just save up to go to a geneticist, cause that’s where you’ll end up either way. Literally a diagnosis you could get in two visits.
It's incredible that she went through all this and survived. Especially refreshing to see her speak in this video. Very happy for her!
Thank you so much - KC (Katie Coleman)
@@katiekickscancer_kidney Very welcome! ^^
I suddenly started having headaches and seizures age 29. The doctor sent me to a psychologist for anxiety (even though I had been born with spina bifida that had been repaired). Eventually 2yrs later as I got much worse a brain scan was done. A day later I had emergency surgery as scan showed half my brain had disappeared because of fluid causing pressure. I see so many other people being ignored or diagnosed with anxiety and not believed til it becomes life threatening.
I never got answers for my mysterious illness that left me largely bed/housebound for years, but I was so blessed to have a doctor who believed me and tested for everything she could think of
As a 2x cancer survivor myself, I'm glad Katie survived this rare cancer. Here's hoping you make your goal for this fundraiser.
Yes I had triple negative breast cancer. Congratulations on beating cancer
i heard you beat cancer, can u beat goku tho?
@@bagelinpond2433 what is that
@@candace27co It's someone being dumb and using Dragonball (an anime/cartoon) humor. Goku is like a god in that show.
@@oldladytrexarms oh. I guess not 😂❣️😂
"I'll help get the ball rolling." That single line is the best line. It almost took me to tears. One of authority, using their authority and reach to help the health and well-being of others he does not know nor will ever know. That is what care and love is all about.
That makes two of us 🥺- KC (Katie Coleman)
Except RUclips is not publishing that information in his description. He tried to apply the foundation information. 😮
This was fascinating. Thank you for showing the patient at the end and how to help.
My son suffered for a couple of years, he would go to doctor's, they would all say he was having back pain, he stared having blood clots in his urine, he went to the emergency room, they did a ct scan and found cancer, kidney cancer and it had spread all over his body, we had him for 5 months before he died, he was 42 years old.
My son who passed away from a tumour, was seeing his dr for quite some time,,then my son decided to get a second opinion, and the next dr found he had a tumour, he was put in hospital in a week and had his kidney out but it was too late,..he was 46..it always pays to get a second opinion, he never felt right but the original dr kept putting him off...in Western Australia.
SO SORRY FOR BOTH OF YOUR LOSSES...WE ALL NEED TO REPORT DRS FOR MALPRACTICE WHEN THEY DISMISS SEVERE PAIN LEVELS!!!!!,AND THEN IMMEDIATELY GET A 2ND OPINION...CAUSE YOU KNOW IN YOUR BODY SOMETHING NOT RIGHT.....
This story reminds me of the different reactions and treatment I (male) and my sister have received for our migraine headaches. I've had very helpful neurologists who've tried not only different pharmacological approaches but also suggested lifestyle changes. My sister's complaints were downplayed and she was told they weren't genuine migraines. Nowadays, I live a happy, migraine-free life by avoiding my triggers and my sister finally received proper medical attention after nearly dying from a brain aneurysm.
Now THAT is terrifiying...I'm glad my allergist took my migraines seriously (yes I got diagnosed with chronic migraine by an allergist, my main migraine symptoms are sinus pain and olfactory hallucinations, so I got sent to the allergist to see if allergies were the issue, turned out to have no environmental allergies, and got perscribed a migraine preventative, and sent to get an MRI done just to make sure the hallucinations were indeed just a migriane symptom and not the result of a tumor...)
Yup. Honestly, I've been lucky compared to your sister's expereince, but I've had neuros who have told me it was my weight, or anxiety, or it was real once but now I am just imagining it etc etc. Finally saw a woman headache specialist and she was brilliant, but it was a long road to getting there. Including being disbelieved about med side effects, and having to wait a year before they approved an MRI. And the reaction in the ER is always a mix of condescending (don't worry honey), and the typical why are you here for a headache, etc.
Pheochromocytoma can cause migraines.
being a girl and having migraines is so unnecessarily difficult. i’ve seen multiple doctors about them. the first was a man. he’d been my doctor my entire life, and i’d never had any problems with the care he provided me. i’ve had infrequent migraines about as long as i can remember, but when i was maybe 12 they got much worse and much more frequent. they weren’t really an issue before because i only had one every 2-3ish weeks. it got to a point where attacks lasted so long and happened so often they never truly ended. at this point, i go to that doctor, asking if he thought i had migraines and if there was anything at all i could do to find some kind of joy in living my life as i used to. he said he didn’t think they were migraines (no distinct aura back then. mostly pain and light sensitivity) and to try midol. like sir, do you think i haven’t tried that yet? so i go on home just raw dogging these migraine attacks. they eventually get a little easier to deal with from me getting used to them and them actually decreasing in frequency for a few years. i go to a new doctor, and she immediately says “those sound like classic migraines” and we started working on ways to identify triggers and make living with migraine easier. i don’t have everything figured out, but my life is a lot better now. idk. the whole situation makes me a little sad.
@Dominic Howell I've seen a neurologist since then, but he was hard to get ahold of and I couldn't get him to increase my medicine dosage, or do any sort of tests when stress from chemistry classes in college made the hallucinations start coming back, so I had to see the allergist again to get that taken care of, and they went away again after increasing my dosage by 10mg (except if I'm extremely sleep deprived and stressed, but it went from a daily occurrence to a couple times a year.) While olfactory hallucinations aren't a common migraine symptom, they do occur in some people, and my mother occasionally gets them as well - though she tends to hallucinate the bitter-almond type smell associated with natural gas, while mine are usually of rotting meat (very reassuring smell to have bombarding you constantly.) I had another MRI done after seeing the allergist a second time since he was worried the first one might've missed something since the hallucinations had come back despite medication, but they didn't see anything concerning the second time either. The migraine issues started when I was in 4th grade, but didn't become chronic until my dad started smoking again when I started junior high, and I couldn't get my doctor to refer me to an allergist until my freshman year of highschool, which is what lead me to actually getting treatment that helped, and the hallucinations didn't start bothering me again until sophomore my second semester of college, and haven't been a serious issue since my medication dosage got increased, so I feel reasonably confident that that situation is under control.
I'm actually kind of amused that you brought up IBS as well, since that's a whole other related kettle of fish I've been dealing with. Around sophomore year of highschool I started getting infrequent abdominal pain, and noticed some asymmetrical swelling in my lower abdomen. I brought it up to my primary care doctor (same one who let the migraines and hallucinations go unaddressed for 3 years) and she said it was "normal for girls going through puberty" and should go away within 6 months. 6 months later, it was still happening and slightly worse, and she said the same thing. 6 months after that, it was still happening and slightly worse, so I brought it up again, and the same thing happened over and over again until I convinced my mom to let me see a gynecologist senior year out of pocket (our insurance won't pay for specialist visits without a referral from another doctor - second allergist visit was also out of pocket since the neurologist was very unhelpful.) The gynecologist found nothing wrong, and referred me to a gastrenterologist, who after doing tests for some inflammatory and thyroid disirders that came back negative, concluded that I had IBS, which is common with chronic migraine patients - and in those cases is believed to be the result of abnormal signals from the brain resulting in the intestines not really understanding what they're supposed to be doing, and doing weird stuff instead as a result. It also turned out that I had a pretty bad muscle spasm happening at one tiny section of my intestines, and it was basically twitching so much that the muscle fatigue from it was causing the pain, so I got prescribed a mild antispasmodic, and the issue went away, and was told to get a colonoscopy if things got worse. In college I developed pretty bad constipation, and got some meds for that, which also helped with the swelling, until things got really weird during lockdown, at which point the swelling got significantly worse, became painful if I pressed on it, and I got sick I'd I consumed anything sweet (like, just fruit or a little sweet tea would make me sick.) This time gastroenterologist decided I needed a colonoscopy right away since that was NOT normal, even for IBS, and I turned out to have a massive polyp that had to be removed. After that the swelling went down dramatically, I could eat sugar again, and my constipation issues improved a lot as well, so the polyp seems to have been a huge part of the problem, and was probably slowly growing in there for years...
This is such a scary story. It genuinely gives me chills. I'm glad she was able to make a recovery and is now able to talk about her experience and found something in wake of her experience.
My wife has struggled with that kind of pre-period pain but in her case it was polycystic ovary syndrome, but still, I was so on edge with this case, I'd never had a case from Chubby Emu hit so close to home and in a case where you can't just say "oh yeah the patient is being an idiot", but in one of the few where the patient is being perfectly reasonable and doing the right things.
one of my most loved videos from you. thank you for publishing this story
I had IBS With chronic constipation from age 18 to 40 and this was a very bad case. No doctor would help me. They just gave me a packet of metamucil and sent me away (as though I wasn't trying every high fiber diet possible already). Everyone I told in my life rolled their eyes and told me to eat more fiber or drink more water. My condition was so bad I could not work or do anything else. I was rejected by my family. After it suddenly went away at age 40 I was overjoyed, but it came back this year (age 58) and now I find out that it has a name and treatments. I also learned that it was known back when I had it the first time. Why do doctors do this to people?
I may or may not have shed some tears hearing that she survived and recovered. Advocating for yourself is paramount when it comes to your health. And as someone who has to advocate on behalf of others it can be very frustrating dealing with the medical system at times. While not anywhere as serious and dire as this case, I've run into the "it's just anxiety" excuse even as the patient was peeling the skin off their fingers 24/7.
When I reported multiple headaches over the course of a week my doctor was immediately concerned of what it might be. The thing is, my doctor is a PhD psychotherapist that I'm seeing for the PTSD and anxiety disorder I acquired from a long hospitalization after a car accident. If anyone should say something is anxiety it should be a shrink but he was very concerned it was biological. I do not trust MDs at all any more.
When I was 20, i had the worst possible headache.
I was told it was a tension headache and sent home.
The following day I skipped work, i was vomiting and called my husband to take me back to the hospital.
The on call doctor thought I was drug seeking and wanted me to leave - never mind that I was vomiting into a pan.
Fortunately, a specialist was walking past and heard the exchange and offered to take over.
I had meningitis.
what a fun twist to get to see the actual patient at the end. im glad she is doing well and has begun to raise awareness.
Thank you so much for drawing attention to this sort of thing. I had an instance where my gallbladder produced a stone that would have almost monthly flare ups and the pain was like a knife was striking my stomach. I was sent through multiple doctors and specialists and was written off as 'woman menstruating' or worse, 'woman who doesn't want to poo' or 'hormonal and attention seeking because they see a therapist,' It took an ER visit at 3am on a weekend(different staff, different treatment) to FINALLY diagnose me in time. The gastrointestinal surgeon was the one who found the yellowing in my eyes and alerted the team about it. My pancreas and liver were failing.
Gallbladder was removed after a 3 hour operation because they couldn't find it. During all the pain, my organs had shifted. They had to do a full cavity search haha. Had no idea organs could move like that. All is well now, though. Hoo Rah!
This happened to me. At 25 I spent 3 years in extreme pain and had a history of gall bladder cancer in my family. Doctors kept telling me I had acid reflux. 3 years later my gall bladder ruptured and almost died. Doctors just kept ignoring the symptoms because I was "young, fit, and male." I ended up having 8 surgeries and 10 years of my life stolen from me.
20 years a grumbling appendix here, the pain I experienced during those years was so bad they never picked up on it until my appendix was rotted and started leaking. I feel your pain. Same thing as you they told me acid reflux and ibs or maybe chrons then more testing shows nothing. It's a joke the medical system when these things happen.
This was such a rollercoaster of emotions, I was on the verge of tears fearing the dreadful words "at autopsy". I'm so glad and relieved to see KC recovered at the end, even though it costed her a kidney.
Spoilers
@@declanmark2809 Don't read comments unless you've finished the video. Is this your first day on the internet?
look I don't want to be mean but, crying?
@@pain4066 some people are more prone to crying than others. as someone who can only cry in very rare cases, i wish i could cry more.
@@strange144 I was waiting for ads to end, damn
KC, you are a strong & special inspiration to many people. I pray life will give you whatever you need, cause you have been thru enough.
I was turned away from the emergency room three times when i was in severe stomach pain. I have mental health issues and the ER doctor told me to go talk with therapist about it. It got to the point where I couldn't stand up anymore. My mom called an ambulance and in the ER they finally did some tests. I was diagnosed with pancreatitis and needed emergency surgery. While having surgery they also said my gall bladder needed to be removed. I was 28 yrs old at the time.
The typical "that pain is all in your head" response.... Confirmation bias.
I was dismissed multiple times with my doctors including ER docs. My pcp even called to cancel an appointment i had with another doctor in the clinic because she said it was just "anxiety." I was either told it was anxiety or i was drinking too much caffeine. I knew something was wrong. I was losing my memory, i wasn't myself. It had gotten to the point i was so delusional i called 911. They took me to the hospital. At first they thought it was mental health again, but the psychiatrist there was smart enough to bring in a neurologist. Turns out my immune system was attacking my brain. I wonder where id be if i hadn't been treated for it...
Not in a good spot
That dr has no right canceling other appointments, that's unethical because it's your right to get other opinions, goes to show he thinks he knows all. I'd be sure to let him know and the state medical board how incompetent he is at the end of it. Life's hard enough, you don't need people you're paying bookoo bucks to basically make your life harder. Sorry but I have 0 patience for incompetent medical staff, I've been thru it and thankfully got my issue resolved.
@@pomelo9518 it was treated with a process called plasmapheresis where they separate plasma and cells to remove antibodies.
All my neurological issues are being dismissed as mental health
@@lovelesscosplay7864 What is the name of that condition? What was the diagnosis? Do you have to take medication?
Its always dismissed as anxiety or related to your period. Until your in a critial situation and then it turns out to be something bad.
Having the right doctor is everything.
Really like the real person update at the end - truly amazing. She’s a unicorn to have gotten that and survived it
If you are female and the diagnosis isn't obvious, its always "anxiety."
Or "It's your period. Suck it up."
or Munchausen's syndrome
Going to the doctor as a woman is terrifying. There are way too many stories of misdiagnosis based on dismissal of our issues and pain as 'anxiety' or 'period related and not to worry about'. You have to act in an unreasonable manner to get the tests that you need. Like, she had cancer for over two years. Jesus.
Anxiety is the new hysteria. And you are absolutely right. If she had been a man, she would have been taken seriously a lot earlier. :(
@Stefaan VdA Anxiety and "you just have a bad period". I know at least 4 women who have had severe abdominal issues, told by their gynos that "they just have bad cramps."
Its the good old Zebra and horse issue, and whenever the patients is women, doctors are predisposed to think of certain horses, that's why having a stable family doctor can be very useful, every doctor are predisposed to think horse whenever you are on first few visit, but if you have been visiting same doctor for last 10 years, and they knows what exactly define as ''normalcy'' for you, things change.
They do the same as a man. They were dismissing my resting heart rate of 140 for 4 years (On the rare days when I am fully ok it is 60). They were still dismissing it when it was associated with other more serious symptoms like an internal gi bleed (which they dismissed too as must be the hemorrhoids for eight months until my hemoglobin was 7). The only way I ended up being diagnosed was self diagnostic as mast cell activation syndrome followed by finding out an expert that just confirmed it recently. I'd bet that even with this diagnostic I will still be told that it is anxiety when in reality I am much like the dog in the fire saying "this is fine".
Any attempt to resist being dismissed is interpreted as "he is ok, it is anxiety" instead of "he is fighting to not collapse, sweating just to stay upright and pulling all of his strength to try to form coherent sentences through a huge migraine" so I even stopped mentioning heart rate, I just told them about the blood diarrhea, the rashes, the gut pain, the fatigue. Whenever they noticed they still said that it was anxiety to which I always replied in the calmest voice "I am not anxious, it is a symptom" , it was always ignored.
This is true. Women STILL die more often from heart disease and complications ( stroke etc) because we are told " you are over -reacting / its anxiety / its gastric " etc. Men get referred for further tests for exactly the same symptoms.
My sister is a PA at an ObGyn office. She said they regularly find tumors when a new patient is a young woman on hormone replacement treatment. It's a tumor, the other physician simply gave her something to mask the symptoms rather than digging deeper to find the cause. Just like what happened here. All these doctors and nobody bothers to palpate her abdomen?!!!