Wasn't me, but there was a woman who was chronically tired for years. I don't mean normal tired, she described it a though she felt addicted to sleep. It wasn't until she slept for there days straight that she realized something was seriously wrong. It took a long time to figure out, but it turns out her brain was constantly producing anesthesia. She'd been walking around and driving for years as if she had just gotten out of surgery. Her doctor submitted a special request to the FDA to get her the medicine she needed. She has to get it IV injected 3 times a day, but she's doing well.
O.M.G.. you literally described me. Ive been like this 12 years now, sleeping 70+ hours happen yearly, I sleep like 50-60% of the time, when 30% is normal. The weird places Ive slept in is sorta impressive. Tried to get doctors check me out several times, but when its not the usual suspects (apnea, thyroid, B12, etc), the interest dies. When I finally saw neurologist, all glorious 15 minutes of it, he basically told me Im taking time away from peeps with real issues, like brain tumors and wasting his. Women & healthcare.. I have more or less given up, this is my life now. Or this is how my life goest past me, rather. Im sooo happy someone else got answers tho, unbelievably so!
When I was 14 I started becoming tired more often, I napped constantly, and when winter came around I had a chronic cough plus my lymph nodes in my neck swelled up. Both of my parents, nurses, chalked it up to being sick during the winter, and napping because that’s what teenagers do. I was in health class one day and flipped open the big textbook to a random page. Hodgkin’s lymphoma, all my symptoms matched up, I couldn’t believe it. I begged my mom to get my blood tested and she took me to the doctor before school to get cultures drawn. I was pulled out of my second period class and sent straight to the states children’s hospital over an hour away. I had Hodgkin’s lymphoma stage 2, found by way of blood work showing a white blood cell count of almost zero, and later a softball sized mass pressing on my heart, as well as cancerous masses in my neck. After a successful year of treatment we celebrated with a vacation on a cruise, everyone was in good spirits, besides the fact that my father was acting a little different than usual. I returned to football that season after feeling well enough to play, my father wasn’t there to pick me up from practice and when I asked where he was I was told he was in the hospital and no one knew what was wrong. My father was diagnosed with a rare brain tumor right after I finished chemotherapy. He held on for about 10 years, passing a little over 2 years ago now. Treasure life my friends, it can be hindered and taken away in an instant. Hug your parents, hug your children, hug your brothers and sisters.
Not terminal, but life changing. At age 17 I got very blurry vision, was nauseous, and had to urinate with a full bladder every 15-minutes around the clock. The kind of full bladder where you run to the bathroom or you know you'll make a mess. Ended up losing 40-pounds in 1 week. It was finals week in January of my junior year in high school, so I wanted to wait until that week was over before going to the doctor. Ended up comatose in the hospital as a newly diagnosed type-1 diabetic. Their equipment could only measure blood sugar up to 2,000 mg/dL, so I know I was higher than that. 39 years later and here I am.
When my daughter was about 6yrs old, she started to develop a large hard mass on the upper inside of her arm bone. It wasn't noticeable by just looking at her, but when she showed me It was horrifying. We went immediately to her pediatrician, and they did all kinds of testing and MRI, and I couldn't help but think the worst, and so did the doctor. Luckily, it was a benign over growth of bone in that one spot, and it was better removed when she was older and she stopped growing. In her late teens, they removed it. She is 30yrs old now and has no more problems with it. I could not express the relief when we found out it was not cancer and was easily fixable!
My dad died six weeks ago. He was in late stage heart failure and gradually weakening. My mom knew he had 2-6 months, but she didn't tell me so it wasn't constantly tainting my interactions with my dad. My dad and I talked every single night in the 14 months leading up to his death, but the day before, I knew something was very wrong. He sounded so weak on the phone. We talked for over an hour. We made plans. I told him how happy I was in my new apartment with my partner. The next morning my mom called me early saying my dad fell in the shower and they were at the hospital. I knew. I don't know how I knew, I just did. I got to the hospital with my partner (I can't drive) and saw him in the ICU and got to tell him he didn't need to worry about me. That he was my superman and I loved him. He was gone a couple of hours later. You don't know until you know. But every condolence makes my heart happy. So thank you for that, if you happen to see this.
Story 9 was sad. I hate when parents just brush off their kid's worries or complaints. Reminds me of when I was a little kid. I would tell my parents about how my legs hurt but they brushed it off. I think my mom finally took me seriously when I'd spend the entire afternoon on the floor with my legs stretched straight out. I'd be in so much pain from sitting on a chair at school that my legs would throb. Stretching them out somehow helped. Turns out I had childhood arthritis. Got big shots in the back of my knees 😢
Being a woman, I know a lot of kids diagnosed late with Endometriosis (keep in mind, some start the womanly stuff around age 11), complaining of "bad cramps and an awfully heavy period", everyone is brushing the kid off, parent, doctors, etc. My own brother's kid had to have an Appendectomy after complaining of "bad stomach" for months. It is insanely baffling just how many kids have to deal with so much pain because of this.
B12 story- through the full story i kept thinking "man, that sounds like my b12 deficiency but worse" and was surprised that i was right on the nose. It sucks hearing that people go through this as well, being told you have to take shots lifelong is so freaking daunting. But they really make all the difference with the sleepiness though. I've fallen behind on my shots and that paired with my depression has me accidentally sleeping 16 hours... thankfully i just restarted my shots so fingers crossed.
My mom had the same exact thing happen to her as in Story 6. The metastasized liver cancer (which caused blood toxicity) made my mom delirious. It was so painful to see her go through that. I wanted to either donate my liver or have the doctors put her on blood dialysis. But they said it was all too late for her. I wish I reacted differently to the whole situation but hindsight is 20/20. Rest in peace mom.
As somebody who has End Stage Renal Disease and rely on dialysis to continue living, this video is hard to watch. Mine was a total shocker, I woke up one morning a month before i turned 19 and was peeing dark cherry Kool-Aid with no warning signs my kidneys had completely failed. Life went on just fine until i was 26, when i started getting really sick and started bleeding from my nose really badly, and when i went into the hospital I got diagnosed. I've now been on dialysis for 7 years, and unfortunately I'm not entirely sure how much longer i have left. Live your lives to the fullest and regret nothing.
That's so sad. I'm so sorry. I hope you aren't in any pain, i hope you have your loved ones around you and i mostly hope your heart is peaceful my friend ❤
@@georgiewatson8688 I'm lucky enough to live with my aunt and older cousin, who both help me out so much. I'm truly blessed to have them, and my friends that are more like family.
The thought of a terminal illness is a terrifying and a terrible, just knowing that the end is coming and there is nothing you can do but wait and hope that maybe you survive is awful
Oh man that anemia one could be my story. No energy or strength, particularly in my legs, dizzy all the time, went to the doctor, got blood work done, went home, got a call like an hour later asking me to come back in because my b12 was so low they werent sure how i was ever awake. A shot a week for two months then a shot a month sonce. We're still working on why it got so low to begin with. Second time in my life doctors told me "You should be unconscious right now" the first time was after a bicycle accident, went down a hill I shouldn't have gone down, met a truck at the bottom, tore up my leg and lost a lot of blood.
I have Ehlers Danlos Syndrome too. Mine isn't as bad as in that story but it's still horrible. I got lucky that a doctor noticed my hypermobility and told me about EDS, but I had to do my own research and find the specialists that I needed until I found a special clinic and they were able to diagnose me. It's been an exhausting and painful journey so far.
I have hEDS, I immediately went to Google after hearing that story. Scary stuff! I didn't get diagnosed for a lot of my injuries bc "your range of motion is good" 😂
I have HEDS have dislocations since age 11. I’m 42 now and have had around 30 surgeries and wasn’t diagnosed until I was around 30. And it was a fluke I took one of my kids into a walk in care and he asked my daughter if she did sports and she said no my mommy has a issue with her joints dislocating so we can’t. He turns to me and tells me that I have heds and that is why I had preterm labor with all 4 of my kids!
My grandpa experienced weird symptoms, but having been a working man all his life, he procrastinated getting checked out. When he did get an exam, he was misdiagnosed. It took another 4 months to get him to get a second opinion. When he was finally properly examined, they found stage 3 stomach cancer. To make things worse, having grown up a farmer and single father, he wanted to budget on his treatment. He went to the VA who magestically fucked it up. He passed away in 2011 RIP Papa 1933-2011
Same with my grandpa on my mother's side, stomach cancer too. He was feeling "exceptionally well" for several months - the immune system overworking itself, like feeling extremely healthy right before the flu because your body was already fighting it. He "crashed" health-wise and died a couple weeks later, not being able to comprehend the world around him in the hospital bed.
My grandpa went through something similar, but it wasn't cancer as he did complain of pain in his stomach; only for it to be an aneurysm. The aneurysm wasn't discovered until after they did an autopsy. The doctor was looking everywhere else BUT his stomach and simply sent him home to die. My grandfather passed away August 25, 2010. He had a stroke months earlier, and was diabetic. I think that if the doctor had actually listened and treated the aneurysm, he probably would have lived a couple of years longer. He essentially wasted away to a skeleton...all because of one doctor.
wasn't me, but my mom: She was diagnosed with COPD around 15 years ago. It's basically a disease that causes your lungs to gradually stop functioning and keeps you from from breathing out the carbon dioxide that is left in your lungs after absorbing the oxigen from the air. Which in return causes an emphysema and gradually poisons you with carbon dioxide. She's been a hardworking woman throughout her entire life and that's the main reason she stayed in such a good shape until she was forced to retire 3 years ago (at age 57) due to her illness getting so bad that she couldn't do her work anymore. Her health has been getting gradually worse ever since because she barely goes outside anymore and therefore doesn't get the cardio needed to keep her physical health from deteriorating. 2023 was the year it started to REALLY go downhill though. We had to call an ambulance on several times due to my mom almost choking to death in front of our own eyes, ending in a several week hospital stay every time. She's pretty much bedridden 24/7 and can't even eat without having difficulty breathing. She is currently in the last stage of her illness and is pretty much in a constant state of severe CO2 poisoning, which makes her forget a lot of things and even causes her to hallucinate or go into psychotic episodes. The latter is the most recent development though. We had to call an ambulance 2 days ago because my mom had extreme hallucinations and started talking about random stuff, sorting imaginary objects or holding a full conversation with my older brother, who passed away almost 8 years ago. turns out she had enough CO2 in her blood to pretty much put any normal human being into a CO2 induced coma and cause respiratory failure. My mom is doing a bit better now but she has absolutely no memory of what happened the night we sent her to the ER. She also is still currently in the ICU because her condition tends to suddenly drastically worsen within just a few minutes. These past 3 days have been hell. At the time we called the ambulance, the doctor said that she might not even survive the night. But she somehow keeps bouncing between doing well enough to be released from the hospital to being in critical condition again shortly after. Even though i don't want to believe it, deep down i feel like my family might spend this year's christmas without my mom on our side. The thought makes my heart cry. i'm only 23 years old but i've already lost my two older brothers and all my grandparents. And my mom is in the final stage of her terminal illness, fighting for her life every day. Edit: I know this is quite a lot of text but i just had to get it off my shoulders and leave it here for people who might struggle with a similar situation.
I'm sorry about all the losses, past and anticipated. My mom was very much like yours, so I know exactly what you mean. She passed from COPD/emphysema in1999 at age 68, when I was 32. The last handful of years she was in and out of the hospital, sometimes hallucinating and sometimes imagined herself at younger ages, like with her long dead parents, etc. On the other hand, her last time in the hospital (a few days before the very end) she was completely lucid and spoke with visiting family with wit and presence. Like leaving with her best lines
If I didn't have the lifesaving surgery I did, the docs said within6 months I'd be dead as my spine was so twisted my diaphragm could barely move to help move my lungs to get oxygen to the rest of my body. This was 18 years ago, I was a senior in high school and about 17 when I taken serious about my back pain. So I guess my first sign, that I ignored, was a growing deep deep ache in all of my bones, but especially in my back. Finally, at 17 years old, I couldn't contain all the pain in my back inside me, keep calm and carry on and all that shit, so I started going to the ER\ED. I'd been checked for scoliosis, so I thought it was because of working and building in my HS theatre program, and I also had a physically demanding job at our city's zoo. My second sign was I actually grew to 5'3", but then I shrunk down to 5'1". Post-surgery, with my spine straightened and fused from Thoracic 3 to Lumbar 5, which is like 80% of your spine, i am 5'6" on a good pain day. Strangely, my mother, with no professional medical training, figured out what my disease is and paid for the test and films out of pocket, because insurance said I already had found no scoliosis. What I have was then called Schuerrmann's Kyphosis, now just called Schuerrmann's Disease. They think Richard III had it, why his back was arched and deformed, if anyone cares
1:54 My heart goes out to that person. I also have Ehlers-Danlos but the very mildest form, meaning my joints have extra flexibility. Someone could try twisting my arm behind my back and I wouldn't yell in pain (I have a younger brother, so you know how this happens). I've read about others who have the more serious form of the disorder, and it sounds horrific.
Story 4 reminds me of a friend’s sister’s story. She was having very bad headaches to the point where she wanted to smash her heard on a wall. She went with her father to hospitals in our country but they didn’t find anything and said she was fine. Her dad was feeling something wasn’t right at all so they flew to Turkey (the country they’re originally from). When they got to a hospital, the doctor saw what she had and was shocked she was still alive. She had a tennis ball sized tumor on her brain and immediately went to surgery. She’s okay from last I heard thankfully
13:05 (The one with epilepsy). I'm epileptic myself and I get the "daydreaming". It's like being awake but unconscious at the same time (or a lucid dream but the other way round). My arms twitch/tense up. My mum said it was really bad as a kid, when sitting cross-legged on the floor watching TV, I would lean forward so far that my chest was on my legs, my arms would also extend and twitch and my breathing would sometimes stop. This is also linked in with the daydreaming where I was not aware it was going on until I was called or I was hadn't taken a breath for so long that I was in danger of passing out. I wasn't diagnosed until I had my first grand mal seizure at 20. The doctor who diagnosed me said that all the episodes where I tensed up or daydreamed were "mini seizures" and also said that If I had heard ringing in my ears (tinnitus) without an obvious cause, then it was probably related to the epilepsy (I had always thought that was normal). Another thing was that the cause was fluid on my brain and given that I have not received any head injuries, and my birth was labelled as "traumatic" because I had been fitting on my right hand side (I was in ICU for nearly 4 months). I'm a Neville Barnes baby and there is scar tissue on both of my temples. So the running theory is doctor squeezed too hard causing brain damage. The hospital itself has a reputation for medical negligence. Also they told my Mum, who is also epileptic that Epilim was not an issue for expectant mothers. Epilim was linked to birth defects nearly 50 years ago.
I get the pleasure of watching my dad slowly fade out. He has end stage COPD, heart disease (he’s had a heart attack before), and diabetes which he has told me is seriously out of control. He can barely walk the length of a couch, and I’m not exaggerating when I say that, before he has to stop, panting, trying his best to catch his breath. He’s 69 years old and we’ve often joked about how he should pass away before he turns 70 so he can go out 69-ing. I’m not sure anything else about this entire ordeal is worse than his neurological issues, though. He’ll get random shooting pains not unlike that of a heart attack, which he can completely vouch for. His mood will rapid shift or his personality will change altogether from sitting to sitting or even in just one meetup. This has led me to suspect he may have some degree of cerebral hypoxia due to his COPD. After all, the last I heard about his assessments, his lung capacity was at 23% and that was six years ago. That all in consideration, having been watching him slowly deteriorate, I honestly wish him relief. I know he won’t improve, not just unlikely, it’s definitively impossible. Which sounds pessimistic I’m sure but I consider myself more pragmatic, instead. I wish him release, for his suffering to end and for him to finally be reunited will his late wife, me mum. She passed away in 2016, and I don’t believe he’s been the same since. He may drive me absolutely nuts at times but I do love my dad, even if he doesn’t exactly support me for my identity or sexuality or what he perceived to be my religion. It’s more complicated than that. He’s all I have left from my lineage. His parents passed away in ‘73 (his mother), and ‘90 (his father), as noted, me mum washed away in 2016, and my grandma and grandpa passed away in 2022 and 2021 respectively. I guess I just don’t want to be alone in that sense. Even though I have two kids and a wife, it would just feel extremely lonely…
I have Ehlers-Danlos Syndrome too, although without the digestive disorder, so it is unpleasant but not terminal. It basically means that all my connective tissue isn’t built correctly, making it easy to dislocate joints and causing my muscles to constantly work overtime to compensate, causing chronic pain and fatigue. I am 21 and feel like I’m 40. I was never able to keep up with kids my own age, even since I was 2 years old. For a long time I didn’t even understand that it wasn’t normal to be in severe pain when physically tired. I even had a muscle biopsy done when I was a small child to make sure it wasn’t some kind of MD. It wasn’t until I was in my early teens, in and out of physical therapy for miscellaneous pains all over my body, that a young physical therapist finally noticed my hypermobility and suggested we look into EDS. Thank you Aaron, you changed my life.
Hey there fellow Zebra! Isn't it crazy that some people wake up without pain and don't have to think about how they move so they don't sublux something? Absolutely wild. Sending you lots of love!
i have EDS as well. i'm only 14 so i might not have taken the full force of the disorder, but i am forever grateful that my symptoms are only mild (joints have hypermobility and ache a lot, especially in use)
@@BunnyBoing It's really great that you were able to get a diagnosis at your age! I remember being in middle/high school thinking that I was just lazy and uncoordinated (well, I was but that wasn't the main issue lol). Be kind to yourself as you get older! I'm so glad that your symptoms are mild!
I potentially have EDS as well (in the process of getting diagnosed). I also have POTS and gastroparesis. It's such a nasty thing to experience. I hope you're doing well!
Im glad my dad survived the lung cancer. And thyroid cancer. And widowmaker heart attack... He certainly had a lot of these symptoms told but i am elated to say hes improving
Videos like this always hit close to home. I'm not diagnosed with anything terminal, but I have multiple chronic illnesses that I will have for the rest of my life. The reality of being disabled is absolutely crushing sometimes. I can't imagine knowing you have an ailment that could kill you at any time. The closest I think I can relate was when I was being investigated for cystic fibrosis last year after I got a spontaneously collapsed lung on top of everything else. When my sweat tedt came back as borderline and I needed more testing, as first it was more "oh great, ANOTHER thing." But after reading up on it and realizing how drastically it can affect your lifespan, I was terrified. Luckily, I'm only a carrier. Currently deal with the affects of gastroparesis, GERD, POTS, migraines, and possible hEDS. I actually just had a feeding tube placed on the 20th of December. None of my conditions are technically fatal, as I said, but there are many days where I do feel hopeless. I send so much love and well wishes to those who are suffering from chronic illnesses and terminal conditions; I see you, and I understand your pain, at least to some extent.
My disease is not terminal, but it is chronic, and it has almost taken my life multiple times. I am thankful to be alive! Here's some of my...very long...story: I have Crohn's Disease, and I was diagnosed when I was five. However, Doctors would constantly argue that my symptoms didn't "line up" with Crohn's and tried to tell me, a literal child, and my mom, the only one who could put my pain into words, that we were faking everything for attention. I was told they'd remove my Crohn's diagnosis from my records by the age of 18 if I didn't have a flare-up. Come 2018, I was 17 and in severe pain that I had put up with for years at that point, unable to keep food down. I was in extreme danger, my lab results made that clear, so I was finally consulted by a surgeon who looked over my scans. He was a very kind and talented surgeon, but he underestimated how much damage my body could do to itself, in part thanks to the scans being unable to show the full story. "It'll be a quick, 45-minute procedure," my mom was told...cut to 4 hours later, with her being informed by a nurse that things were, indeed, "Much worse than expected." Three sections of my small intestine had died and caused strictures, which were removed and my small bowel was resected- I have a very cool and disgusting picture of the surgeon and nurses holding my dead intestines! I very well could have died, whether of malnutrition or sepsis...but the latter is an upcoming story, haha! The surgeon told me that it was indeed Crohn's Disease, but certainly not the regular kind. He said my type of Crohn's has a >2% chance of occuring, as mine wreaks all its havoc only on my small intestine rather than my entire GI tract. I did great for a few years! I was put on IV immunosuppression therapy, but...eventually, after moving between three different kinds, they stopped working. Cut to Summer 2022, I had been in excrutiating pain and on steroids for months, and, suddenly, in my sleep, my small intestine perforated! I woke up from the excrutiating (and I mean EXCRUTIATING, the worst I'll likely ever experience) pain and threw myself onto the ground, dragging myself to the bathroom because I was deliriously convinced it was just gas pains, LMAO! My friend asked if I was okay after minutes had passed, and at that point, I felt and knew something was severely wrong inside of me, so I asked them to get my mom for me. We rushed to the ER and, after a horrid 40 minutes of waiting despite it being a slow 4 AM, I was finally seen and told the great news: I was going septic, as my small intestine had burst open. It certainly explained the pain... The nurses and surgeon didn't know if I'd wake up, if I'd have any lasting damage if I did, and my grandma asked my mom what she would do if I died. I don't recall many things, as I was drifting far from consciousness, but I do remember hearing my mom respond, "Then I would have gotten to spend 22 years with the best daughter I could have asked for." In my daze, I also apparently sat up and told my mom, "I will not let this win." And I was right. I woke up fully a day after surgery (though apparently I conversed with some of the nurses while I was still unconscious, haha), tons of IVs in me and my central still in my pelvis...which ended up causing a bloodclot, woops! I eventually was able to start walking...very carefully...and recovering until I suddenly had to be rushed back in for a second round of emergency surgery. A hematoma formed at the site of my surgery, and it hurt bad! But all my surgeons were amazing, absolute joys to talk to. I woke up much quicker from that second surgery, and my body got back on track to recovery as well. I think it wanted out of the hospital just as bad as I did. I eventually said goodbye to all the wonderful ICU and step-down unit staff and was wheeled out of the hospital on June 24th, 2022. The blue sky had never been more beautiful and the warm summer breeze felt heavenly. It's been a while since then, and I have an amazing GI doctor who makes sure to take extra care with me and my condition. He's genuinely amazing. He and my surgeon stayed up brainstorming treatments for me as I laid in the ICU, and I've never felt like I'm in better hands! I've been in remission since, and love to live. I'm happy to be here, happy to share my story, and so happy to still be at the side of everyone I love. Thank you for reading my novel-sized reply if you see this! Videos like this just inspire me to tell my story. I'm often told I'm a really strong person, but there's many days where I mourn what life could've been like if I didn’t have my chronic illness. It's hard to be "strong" sometimes. I've had 2 feet and 6 inches of my small intestine removed in total. I can't absorb nutrients as well anymore, mainly iron and B12, but those can thankfully be remedied with infusions/injections! :) TLDR; I'm sick forever because my immune system has beef with my small intestine on incomprehensible levels. But I'm alive! And I'm doing well. And I hope to keep doing well.
I wish I could trade places with one of these People, who want to be alive. It'd be a good way to go knowing that in the process I gave someone who wants to be here more time. Meanwhile I fundamentally hate being alive- it's not a Mental Illness, it's nothing a drug can fix- the reasons I see things this way make it impossible to 'fix'/change. Life is like Poker- most hands are foldable junk.
I wonder if the second story has vascular type because all EDS types have normal lifespan except vascular type. It is a spectrum and some people have it worse than others. She may have gastroparesis or cyclic vomiting disorder - both common in EDS. Also, I’ve never heard that EDS “eats the collagen”. I’ve always been told it produces faulty collagen. I did many papers on this disease because I have it (not the vascular type). Hypermobile and classical types aren’t thought to be that rare anymore. Of course, there’s an issue deferntoating between hypermobile spectrum disorder (my friend has this) in which it doesn’t affect your body systemically but many unknowing Drs diagnose patients with this. Both my daughters and I have EDS and all of us have had issues since birth. It’s hard to get a diagnosis but we have a geneticist in our town so it was easier to get appointments and get diagnosed.
My uncle had severe back pain and ignored it for at least a few years. He thought it was just arthritis from standing and we have family history of crippled backs. By the time he finally went to the MD to check it out it was too late. He had a cancerous tumor on his back that had spread. They tried to operate but closed him back up because they said it would have done more harm to try and remove the tumor. He only lived for about another four months and passed at age 69. If only he had gotten checked out sooner; it makes me sad to write about it and remember what a talented person he was. Brilliant and so talented; this should not have happened.
I had had pain in my right leg for a loooooong time but I never thought it was something severe. I mean… it is ”just a leg”. It was discoloured (burgundy/purple)and got wounds now and then that had troubles healing. I did go to the dr’s quite a few times, but they all just gave me antibiotics which didn’t help at all. Then, one night in the beginning of the pandemic, the pain got so intense I was writhing in pain and… I don’t know, I just knew something was up. It turned out I have a rare disease that has to be medicated immidiately or it becomes fatal. It took months before I got the proper diagnose but unfortunately, while waiting my body got really beat up. I have accepted my situation now and I’m okay with it (as weird as it might sound). Sooo lesson learned: if you really feel like something is wrong with you, don’t let doctors brush your concerns off. Nobody knows your body better than yourself so trust your instincts and stand up for yourself.
Not me, but my Popop had all sorts of problems before he was diagnosed with leukemia when I was 16. He was fighting skin cancer and type II diabetes. The doctors said his diabetes would kill him first before the cancer.... but the summer of 2020 he was diagnosed with leukemia. I remember going into the hospital and he was awake and talking with us just to be intubated and on life support in the next hour. I miss him dearly and wish he saw me graduate and get married to my highschool sweetheart.
My grandpa died of cancer in 2006, when I was 5, and though we don't know what kind of cancer it was we think it was lung cancer. How he caught it? His back hurt when he was doing garden work. The cancer was everywhere and he died only a few months later.
It wasnt me but my mom. Ive heard stories throughout growing up without her after she passed when i was 12. It started with lumps on her breast and they can only speculate how long it took for her to get it checked because it had gone on for longer than we had initially thought. Sge went through the entire year from almost start to finish in the hospital. They thought she was cancer free the night of Halloween only to later find cancer elsewhere. She had 4 types of cancer, including acute leukemia, a terminal form. She went back a couple days after Halloween and died a week before her 38th birthday in December. I miss her every day and wish she had gotten help sooner. She might still be here if it had gotten treated sooner
Re: the person with Ehlers-Danlos Syndrome, there are different types of that condition. Unfortunately, OP had the worst type, vascular, which damages the heart and blood vessels. The other types don't impair life expectancy.
Terminal illnesses I've been diagnosed with are a whiplash (nerves damage) and MDD (major depressive disorder). Both severely changed my life as I was now both physically and mentally challenged. I somehow still attend a job and try to make the best out of my life despite my frontal lobe and neck deep frying itself.
My dad is terminal and I can't even remember anymore. We started this off with "hey, you have liver cancer but we're going to treat it and you'll be on the list for a transplant." Great we thought. The next day, my mom had a stroke. She came out seemly perfectly fine. Went a month and a half later back to the hospital (its 2hr from us that they sent us), day before we went my cat died after spending half the day at the vet for what I thought was just her kidney disease, everyone missed that she had so many issues. Go to London the next day, treatment options, great! Next day, mom is in a coma and dies 4 days later from another stroke. Fast forward to about 2 months ago. Found out cancer is now in his bones and we're just trying for quality of life at this point. I'm pretty sure it was side pain he was getting where his liver is. The terminal part started with really bad pain in his leg, then both.. It's been a lot. Everything in the span on 9 months. 🙃
As both was mentioned in this video I wanted to add my experience w both epilepsy & hypermobility spectrum disorder. HSD is like a less severe collagen deficiency than Ehlers Danlos Syndrome. Seizure disorders are way more common in people with EDS. I have very weak bendy & clicky joints , thin fragile skin hair & nails etc Focal seizures are very hard to diagnose bc you have to be hooked up to an EEG whilst it’s occurring. I had my first Tonic Clonic ( shaking on the floor type) at 18 and my life was never the same (now 24). I had to give up my dream of going to uni , can’t drive , independence is limited , no energy , no ability to work etc. By far the worst effect is that on memory as it effects speech & grammar so my disability is apparent. I used to be hyperlexic & academic now I struggle with the basics. I find I can’t follow threads of info or pad out any thoughts. Brain fog really is an apt name for it bc it’s like being trapped in a world of half thoughts lol My official diagnosis was Idiopathic generalised tonic clonic with possible focal onset but also Catamenial which means menstruation is one of the biggest triggers. For any women reading this pls advocate for yourself bc I went through 5yrs of 1-3 seizures a month doing fuck knows what damage all bc my neuro insisted periods weren’t a trigger & taking meds that didn’t work bc “it usually works for everyone”. It is immensely depressing not being able to form new long term memories , I can remember early childhood better than the last 5yrs. Unfortunately the things I do remember are negative and your brain gets stuck in thought loops where it replays over and over basically torturing itself. There’s so much to rant about tbh. Fuck epilepsy.
My brother has had multiple things wrong with him throughout the fourteen years of his life. First of all he has severe autism, which definitely makes it hard to live with him. He has cysts on his spine that occasionally have to be drained. He has (as well as me and most of my mom's side of the family) has Von Willebrand's disease which means our body takes longer to clot, which leads to heavy menstrual cycles, easy bruising, and recurring bloody noses. My brother also has a certain type of focal epilepsy where his body just kinda pauses like he's spacing out. And finally when he was born he had cancer (either in his gallbladder or liver, I can't remember) and they didn't find it until her was about 5-7 months old. They said he wouldn't live to be a year old. He kicked cancers ass and survived. The doctors then said he wouldn't live to 10 since in cases like his the cancer usually comes back and kills them later. But once again, he defied the odds and is still kicking.
When i was 10 years old, i got pain in my left hip. my parents put it off as just some pain because of the constant sporting i did back then. it wasnt, we went on 10 visits by a doctor and no diagnosis. the 11th visit we had a different doc and they send me off to the X-ray room whitin seeying me walk for 10 seconds. i went and i got back my diagnosis. Pertes. its (in my home coutry) a super rare disease, whit only 1 in the 90.000 people having it. it was super painful and i couldent do anything from depression for a long time. i camo back up and i waited 2 years for it to get better, and then it hit me like a truck: i will NEVER get better. i was very sad. i was in constant pain. there was almost no sleep i could get due to the pain. i only could swim and that was something fun for me, but that enden when someone had a heart attack and died in front of me. now im just... depressed. im 13 now
8:18 this one is freaky because it's hard for even normal people to move anything except their pinky and big toes. Yeah I can move all my toes its just that the ones besides pinky and big are impossible to move by themselves. I'm not the only one that has this right?
My uncle was a stubborn dude who wouldn't go to the doctor unless something was absolutely wrong. He one day was at work and, in his words, pulled a muscle. His back was hurting and for the next few times we saw him, we took him to get a pain prescription, and he came over after work and had a lidocane roller he was putting on his back. That was the last time we saw him before covid and quarantine prevented us from even leaving our house. He called my mom one day and he told her he was actually at the doctor's. His back pain hadn't gotten any better and he was starting to feel worse physically, so he went to the doctor. He called after that and told my mom the doctors had found a mass on his lung. They went in for a biopsy, but he never even woke up from the anesthesia. In the barely a week he was in the hospital, the mass on his lung had gotten bigger, and it was literally pressing against his heart. The lung cancer he didn't even get to know he had killed him. The back pain we later found out was no pulled muscle. It was referred pain of the tumor in his lung.
Heard the beginning of story 2 and immediately knew it was EDS. I have EDS as well but a different, “less severe” type. POTS (postural orthostatic tachycardia syndrome) is a very common comorbidity that goes along with it. I have a service dog thankfully and she helps a ton but even all of the meds and therapy in the world won’t be able to completely cure me. It sucks having to miss out on some life things and coming to terms with the fact I’ll have this my entire life.
I knew as soon as I heard it as well. I don't have a confirmed diagnosis, but it's being investigated currently. I have confirmed POTS and gastroparesis, and when I brought up my hypermobility to my doctor, she referred me to a geneticist. Story two was heartbreaking, and honestly quite scary to hear. I don't think my case is that severe if I DO have it, but it was still scary to hear.
the first story: "I felt better knowing it wasn't leukemia." My thoughts: You immune system is attacking your blood... Isn't that worse? Glad they survived.
This isn't a terminal illness, but an injury. I remember when I was a little, maybe 3 or 4, I had a spiral fracture in my leg. I cried at first, but stopped after a few minutes. My parents brushed it off as a bruise or something. I walked around on that leg for about a week, when my parents eventually noticed that I was limping. They took me to urgent care, and were shocked to find out my leg was fractured. Years later, they told me that they never thought I had literally fractured my leg because of my reaction (or lack thereof). I still have the cast in the basement.
I've gotten 4 autoimmune diseases in 9 years, the Crohn's was really obvious, then I got an autoimmune seizure disorder, then eye inflammation, and my last seizure a year ago they took a brain sample and found my 4th disease but thankfully I don't notice that one. So I have 2 disabilities and no one would know. Hearing that seizure story was interesting. I've had several Focal seizures, but they're mainly tonic clonic (they changed the name from grand mal)
Wow.. You just never know always good to be safe then sorry. I am currently dealing with some thing and stumped because I’m not getting better I’m getting worse but no one’s seems to know what it is. I keep getting bronchitis or pneumonia or Covid. But it’s been like now every other month I’m getting sick and I’m now down 25 lbs and night sweats and aching. I can’t figure it out. I have a weird bump on the back of my shoulder it happened in august when I literally fell asleep for eight hours I saw so cold but yet it was 93 degrees outside and I slept with blankets on me and yet here I am deteriorating and no one knows what’s going on. Odd.
@tatianna8214 - sounds like Non-Hodgkin Lymphoma.. Demand scans - xray, ct, mri, or pet. You are your best advocate. Keep fighting to get tests, scans, etc. Survivor here. Best wishes to you.
The second one scares me because I also have EDS and share symptoms such as passing out from showers and not being able to do things. I’ve been diagnosed with disautonomia but it doesn’t explain the symptoms I have that are similar to that of hypoxia (lack of oxygen) and my rapidly fluctuating heart beat. My doctors know all my symptoms and stuff and I’ve seen many doctors about this so if I had that, they’d have figured it out and told me but still.
Oh yea and I’m chronically anemic. If I don’t supplement my iron it PLUMMETS. Also joint pain which has been attributed to the EDS. Also maybe tiny stress induced seizures causing me to just fall asleep for a while and cannot be woken. Normally I can’t sleep at all and have to take like 4 different meds just to be tired so randomly falling asleep is even more abnormal. I’m getting and MRI and EEG soon so that’s good but I’ve always been a medical mystery
Not a terminal illness, but one that will be with me all my life. I have a medical condition called P.O.T.S it's mostly shown in older people. But it's the worst thing to have when you have to give up the sports that you love; because if you don't then you get a trip to the hospital because you had fainted.
All of these things are why I believe the human body is a terribly flawed design, and should be replaced as soon as we have the technology to do so. The sheer variety of ways our bodies can tear themselves apart for no reason never ceases to astound, horrify, and disgust me.
Man I'm glad when I was sleeping alot 16+ hours it was just a combination of an painful but relatively harmless auto immune disease and severe sleep apnea
Heart attack in very sporty person... They fixed it... One week later his heart stops again, 60m cpr, nothing autopsy comes, his heart just ripped itself apart, there is nothing you can do about that, its instant and unless you are on the operation table 100% fatal (on the table they said its a sub 5% chance to survive) Life is short and sport might kill you.
My grandmas best friend started to act weird, first it was just little things said in passing, but it got worse and fast. When she made 50 sandwiches in the middle of the night, for his already dead sons volleyball team, which he was part of decades ago in his teens, she realized too she had issues. She died just few months later, grandma on her side. Turns out she had Creutzfeldt-Jacobsen disease, prion disease, basically the same as mad cows, it takes one in a million over 70yo, reasons are yet unknown. Worst lottery win ever! RIP Siku, grandma is soon joining you (dementia at 91), take care of her :)
bone cancer story: by this description it is a malignant growth of the bone, bone cells growing on the bone like barbs or corals or tiny grass. Or it could be below the surface and causes fractures. Compared to that most people think of bone marrow cancer, that inhibits blood cells, hence anaemia as symptom. Overall, grim stuff.
I have seizures due to a rare vascular neurological condition (vascular malformation) called Cavernous malformation. Took 7 years to get an answer. I had to have emergency surgery for it.
I had a bone tumour in my right pinkie finger. It was benign but it led to my finger breaking. I could have developed it while in the womb, doctors figure.
I also have a b12 deficiency and they think I have pernicious anemia. No as bad as the person in the story but they still did lots of blood tests and gave me a b12 injection to hold me over until they got more info. My b12 was at 74 and the next week they tested it again and I had 63. The minimum healthy amount was 200
The B12 story I had a strong feeling about it being B12 because I have a variation of it! My mother does too which is what I kept telling my doctor at the time. She literally just got mad and told my partner that I need to stop making myself paranoid and focusing on my mother's health issues like they are my own??? A specialist finally checked my B12 which was also critically low but likely not as long as OP's so I recovered from most acquired issues over my deficiency. Unfortunately, certain deficiencies can sound like anxiety or depression and lead to doctors making assumptions when simple blood tests could really rule it out.
@kaden-sd6vb Always better to check if needed! If it's because of anxiety or depression symptoms make sure to mention that you want to make sure there isn't a physiological reason for your symptoms so they'll check other things in your bloodwork too like thyroid since it can definitely cause those too.
I'm afraid that my dad will eventually get a terminal disease due to his constant smoking, it's *very* likely he'll die before the age of 80. He's throwing up mucus from his lungs everyday and I'm trying to get him to see a doctor, but he never listens. 😢
I wouldn’t say terminal, but then again it’s chronic so I’m dying with it lol Basically since 4th grade, my left kneecap would randomly dislocate. The first time was when I was on a jungle gym and trying to pull myself up using just my legs. I did it, but then my left kneecap dislocated. The pain was excruciating, and I thought I broke it. The whole day I was stuck with a dislocated knee because the school nurse didn’t know why this happened. Fast forward to two years after I graduate, and my kneecap dislocates twice a year. Well I was with an uncle when it happened again, and he taught me a quick way to fix it. As this point my dislocations didn’t hurt, but it did make my leg go cold. Fast forward to about 2 years prior to me writing this, and suddenly, my right knee dislocates. That was the signal to go to the doctor. It turned out the ligaments in my knees are loose, with my left knee ligament being the looser of the two (which is why it started dislocating first). Today, my knees dislocate once a day, but simply swinging my leg out fixes them. Not really painful, but very annoying.
number 3 Basketball sized tumor on the liver. My dad had such a tumor except it was larger than a basketball. Surgeon was able to remove it University of Wisconsin Madison Hospital, I think, I could have been St. Mary's. Anyway he suffered several strokes ovet the next 16 years and was in the ICU for 40 some days. at one time. We eventually lost him the day before my birthday April 18, 1998.
Instantly knew the B12 one was B12 caude it sounds like my symptoms but worse. I was born with the MTHFR mutation so its very hard to get enough b12 so need injections.
Calvinist malformation (aka bleeding of the brain from dead brain cells) this condition is hereditary I inherited it from my dad while not life threatening it is debilitating and since it’s in the brain you won’t know how it will affect you. We never knew that i had it i went in for a hearing test i failed and unfortunately that was the only thing that warned us something bad happened because the next day thanksgiving day I had a 5 minute seizure in front of my elderly grandparents and my dad had to save me from falling on the sharp end of the tv stand I almost cut my neck open in the fall had my dad not catch me much of it was a blur. I lost all my positive memories of my life I can only remember my negative experience the only positive memories I have were the things that were of my hobbies (museums and art) and a feral black cat I named cynder (I miss that feral queen) I also have insomnia and depression and short/long term memory loss I can’t even remember people names at times and it’s embarrassing. And when you add autism and weak immune system to the mix yeah you not only feel like an outsider to everyone but the feeling of being a weakling is also fun to have. I have my surgery in 2013 and here I am 2024 feeling like I’m just living and nothing more despite those around me telling me otherwise. and people who say i know what you’re going through it’s not true you don’t know because everyone individual is different. if we can put the saying walk a mile in my shoes to the people who don’t know what it’s like to be in a sick person position I can imagine people would be more understanding and more carful of their words and actions.
hello I would like to say that the depiction of Ehlers Danlos here is completely false. Ehlers Danlos is a connective tissue disorder that has a collagen mutation NOT your body eating itself!! It is also not terminal most of the time.
I like your videos, but the constant moving screen is making me dizzy and I must close my eyes to listen to your videos. I may have to stop listening to future ones unfortunately.
Im glad my dad survived the lung cancer. And thyroid cancer. And widowmaker heart attack... He certainly had a lot of these symptoms told but i am elated to say hes improving
Im glad my dad survived the lung cancer. And thyroid cancer. And widowmaker heart attack... He certainly had a lot of these symptoms told but i am elated to say hes improving
Wasn't me, but there was a woman who was chronically tired for years. I don't mean normal tired, she described it a though she felt addicted to sleep. It wasn't until she slept for there days straight that she realized something was seriously wrong. It took a long time to figure out, but it turns out her brain was constantly producing anesthesia. She'd been walking around and driving for years as if she had just gotten out of surgery. Her doctor submitted a special request to the FDA to get her the medicine she needed. She has to get it IV injected 3 times a day, but she's doing well.
That is honestly absolutely terrifying... the human body is strange 😨
Was or could it have been chronic fatigue syndrome
Mr Ballen covered this story recently. Definitely worth a listen. Amazing what that young woman managed to achieve while her body was fighting her
O.M.G.. you literally described me. Ive been like this 12 years now, sleeping 70+ hours happen yearly, I sleep like 50-60% of the time, when 30% is normal. The weird places Ive slept in is sorta impressive. Tried to get doctors check me out several times, but when its not the usual suspects (apnea, thyroid, B12, etc), the interest dies. When I finally saw neurologist, all glorious 15 minutes of it, he basically told me Im taking time away from peeps with real issues, like brain tumors and wasting his. Women & healthcare.. I have more or less given up, this is my life now. Or this is how my life goest past me, rather. Im sooo happy someone else got answers tho, unbelievably so!
I’ve heard about her just recently. It was insane.
When I was 14 I started becoming tired more often, I napped constantly, and when winter came around I had a chronic cough plus my lymph nodes in my neck swelled up. Both of my parents, nurses, chalked it up to being sick during the winter, and napping because that’s what teenagers do. I was in health class one day and flipped open the big textbook to a random page. Hodgkin’s lymphoma, all my symptoms matched up, I couldn’t believe it. I begged my mom to get my blood tested and she took me to the doctor before school to get cultures drawn. I was pulled out of my second period class and sent straight to the states children’s hospital over an hour away. I had Hodgkin’s lymphoma stage 2, found by way of blood work showing a white blood cell count of almost zero, and later a softball sized mass pressing on my heart, as well as cancerous masses in my neck. After a successful year of treatment we celebrated with a vacation on a cruise, everyone was in good spirits, besides the fact that my father was acting a little different than usual. I returned to football that season after feeling well enough to play, my father wasn’t there to pick me up from practice and when I asked where he was I was told he was in the hospital and no one knew what was wrong. My father was diagnosed with a rare brain tumor right after I finished chemotherapy. He held on for about 10 years, passing a little over 2 years ago now. Treasure life my friends, it can be hindered and taken away in an instant. Hug your parents, hug your children, hug your brothers and sisters.
Not terminal, but life changing. At age 17 I got very blurry vision, was nauseous, and had to urinate with a full bladder every 15-minutes around the clock. The kind of full bladder where you run to the bathroom or you know you'll make a mess. Ended up losing 40-pounds in 1 week. It was finals week in January of my junior year in high school, so I wanted to wait until that week was over before going to the doctor. Ended up comatose in the hospital as a newly diagnosed type-1 diabetic. Their equipment could only measure blood sugar up to 2,000 mg/dL, so I know I was higher than that. 39 years later and here I am.
Ouch. That's a scary time. At least they caught it before anything serious could happen, right?
When my daughter was about 6yrs old, she started to develop a large hard mass on the upper inside of her arm bone. It wasn't noticeable by just looking at her, but when she showed me It was horrifying. We went immediately to her pediatrician, and they did all kinds of testing and MRI, and I couldn't help but think the worst, and so did the doctor. Luckily, it was a benign over growth of bone in that one spot, and it was better removed when she was older and she stopped growing. In her late teens, they removed it. She is 30yrs old now and has no more problems with it. I could not express the relief when we found out it was not cancer and was easily fixable!
My dad died six weeks ago. He was in late stage heart failure and gradually weakening. My mom knew he had 2-6 months, but she didn't tell me so it wasn't constantly tainting my interactions with my dad. My dad and I talked every single night in the 14 months leading up to his death, but the day before, I knew something was very wrong. He sounded so weak on the phone. We talked for over an hour. We made plans. I told him how happy I was in my new apartment with my partner. The next morning my mom called me early saying my dad fell in the shower and they were at the hospital. I knew. I don't know how I knew, I just did. I got to the hospital with my partner (I can't drive) and saw him in the ICU and got to tell him he didn't need to worry about me. That he was my superman and I loved him. He was gone a couple of hours later.
You don't know until you know. But every condolence makes my heart happy. So thank you for that, if you happen to see this.
Story 9 was sad. I hate when parents just brush off their kid's worries or complaints. Reminds me of when I was a little kid. I would tell my parents about how my legs hurt but they brushed it off. I think my mom finally took me seriously when I'd spend the entire afternoon on the floor with my legs stretched straight out. I'd be in so much pain from sitting on a chair at school that my legs would throb. Stretching them out somehow helped. Turns out I had childhood arthritis. Got big shots in the back of my knees 😢
Oh, wow!
Being a woman, I know a lot of kids diagnosed late with Endometriosis (keep in mind, some start the womanly stuff around age 11), complaining of "bad cramps and an awfully heavy period", everyone is brushing the kid off, parent, doctors, etc. My own brother's kid had to have an Appendectomy after complaining of "bad stomach" for months. It is insanely baffling just how many kids have to deal with so much pain because of this.
B12 story- through the full story i kept thinking "man, that sounds like my b12 deficiency but worse" and was surprised that i was right on the nose. It sucks hearing that people go through this as well, being told you have to take shots lifelong is so freaking daunting. But they really make all the difference with the sleepiness though.
I've fallen behind on my shots and that paired with my depression has me accidentally sleeping 16 hours... thankfully i just restarted my shots so fingers crossed.
My mom had the same exact thing happen to her as in Story 6. The metastasized liver cancer (which caused blood toxicity) made my mom delirious. It was so painful to see her go through that. I wanted to either donate my liver or have the doctors put her on blood dialysis. But they said it was all too late for her. I wish I reacted differently to the whole situation but hindsight is 20/20. Rest in peace mom.
As somebody who has End Stage Renal Disease and rely on dialysis to continue living, this video is hard to watch.
Mine was a total shocker, I woke up one morning a month before i turned 19 and was peeing dark cherry Kool-Aid with no warning signs my kidneys had completely failed. Life went on just fine until i was 26, when i started getting really sick and started bleeding from my nose really badly, and when i went into the hospital I got diagnosed. I've now been on dialysis for 7 years, and unfortunately I'm not entirely sure how much longer i have left.
Live your lives to the fullest and regret nothing.
Thank you for your comment, and thank you for being
Dang.. just hope you have the happiest remaining moments brother, live your life.
That's so sad. I'm so sorry. I hope you aren't in any pain, i hope you have your loved ones around you and i mostly hope your heart is peaceful my friend ❤
@@georgiewatson8688
I'm lucky enough to live with my aunt and older cousin, who both help me out so much. I'm truly blessed to have them, and my friends that are more like family.
How does someone start peeing koolaid and not get checked out for years? Assuming health insurance isn't an issue.
The thought of a terminal illness is a terrifying and a terrible, just knowing that the end is coming and there is nothing you can do but wait and hope that maybe you survive is awful
life itself is a terminal illness.
Oh man that anemia one could be my story. No energy or strength, particularly in my legs, dizzy all the time, went to the doctor, got blood work done, went home, got a call like an hour later asking me to come back in because my b12 was so low they werent sure how i was ever awake.
A shot a week for two months then a shot a month sonce. We're still working on why it got so low to begin with.
Second time in my life doctors told me "You should be unconscious right now" the first time was after a bicycle accident, went down a hill I shouldn't have gone down, met a truck at the bottom, tore up my leg and lost a lot of blood.
I have Ehlers Danlos Syndrome too. Mine isn't as bad as in that story but it's still horrible. I got lucky that a doctor noticed my hypermobility and told me about EDS, but I had to do my own research and find the specialists that I needed until I found a special clinic and they were able to diagnose me. It's been an exhausting and painful journey so far.
I have it as well, I didn't realize it could get that bad though. I feel really bad for that op
I have hEDS, I immediately went to Google after hearing that story. Scary stuff!
I didn't get diagnosed for a lot of my injuries bc "your range of motion is good" 😂
I have HEDS have dislocations since age 11. I’m 42 now and have had around 30 surgeries and wasn’t diagnosed until I was around 30. And it was a fluke I took one of my kids into a walk in care and he asked my daughter if she did sports and she said no my mommy has a issue with her joints dislocating so we can’t. He turns to me and tells me that I have heds and that is why I had preterm labor with all 4 of my kids!
My grandpa experienced weird symptoms, but having been a working man all his life, he procrastinated getting checked out.
When he did get an exam, he was misdiagnosed.
It took another 4 months to get him to get a second opinion.
When he was finally properly examined, they found stage 3 stomach cancer.
To make things worse, having grown up a farmer and single father, he wanted to budget on his treatment.
He went to the VA who magestically fucked it up.
He passed away in 2011
RIP Papa 1933-2011
Same with my grandpa on my mother's side, stomach cancer too.
He was feeling "exceptionally well" for several months - the immune system overworking itself, like feeling extremely healthy right before the flu because your body was already fighting it. He "crashed" health-wise and died a couple weeks later, not being able to comprehend the world around him in the hospital bed.
I called mine Papa too and he died in 2011 from brain cancer
My grandpa went through something similar, but it wasn't cancer as he did complain of pain in his stomach; only for it to be an aneurysm. The aneurysm wasn't discovered until after they did an autopsy. The doctor was looking everywhere else BUT his stomach and simply sent him home to die. My grandfather passed away August 25, 2010. He had a stroke months earlier, and was diabetic. I think that if the doctor had actually listened and treated the aneurysm, he probably would have lived a couple of years longer. He essentially wasted away to a skeleton...all because of one doctor.
@@sadyoshhours2769 Rest in peace
@@turkizno christ, that's awful
wasn't me, but my mom:
She was diagnosed with COPD around 15 years ago. It's basically a disease that causes your lungs to gradually stop functioning and keeps you from from breathing out the carbon dioxide that is left in your lungs after absorbing the oxigen from the air. Which in return causes an emphysema and gradually poisons you with carbon dioxide.
She's been a hardworking woman throughout her entire life and that's the main reason she stayed in such a good shape until she was forced to retire 3 years ago (at age 57) due to her illness getting so bad that she couldn't do her work anymore. Her health has been getting gradually worse ever since because she barely goes outside anymore and therefore doesn't get the cardio needed to keep her physical health from deteriorating.
2023 was the year it started to REALLY go downhill though. We had to call an ambulance on several times due to my mom almost choking to death in front of our own eyes, ending in a several week hospital stay every time. She's pretty much bedridden 24/7 and can't even eat without having difficulty breathing.
She is currently in the last stage of her illness and is pretty much in a constant state of severe CO2 poisoning, which makes her forget a lot of things and even causes her to hallucinate or go into psychotic episodes.
The latter is the most recent development though. We had to call an ambulance 2 days ago because my mom had extreme hallucinations and started talking about random stuff, sorting imaginary objects or holding a full conversation with my older brother, who passed away almost 8 years ago. turns out she had enough CO2 in her blood to pretty much put any normal human being into a CO2 induced coma and cause respiratory failure.
My mom is doing a bit better now but she has absolutely no memory of what happened the night we sent her to the ER. She also is still currently in the ICU because her condition tends to suddenly drastically worsen within just a few minutes.
These past 3 days have been hell. At the time we called the ambulance, the doctor said that she might not even survive the night. But she somehow keeps bouncing between doing well enough to be released from the hospital to being in critical condition again shortly after.
Even though i don't want to believe it, deep down i feel like my family might spend this year's christmas without my mom on our side. The thought makes my heart cry. i'm only 23 years old but i've already lost my two older brothers and all my grandparents. And my mom is in the final stage of her terminal illness, fighting for her life every day.
Edit: I know this is quite a lot of text but i just had to get it off my shoulders and leave it here for people who might struggle with a similar situation.
I'm really sorry for your situation right now, really hope your mom gets better.
I'm sorry about all the losses, past and anticipated. My mom was very much like yours, so I know exactly what you mean. She passed from COPD/emphysema in1999 at age 68, when I was 32. The last handful of years she was in and out of the hospital, sometimes hallucinating and sometimes imagined herself at younger ages, like with her long dead parents, etc. On the other hand, her last time in the hospital (a few days before the very end) she was completely lucid and spoke with visiting family with wit and presence. Like leaving with her best lines
If I didn't have the lifesaving surgery I did, the docs said within6 months I'd be dead as my spine was so twisted my diaphragm could barely move to help move my lungs to get oxygen to the rest of my body. This was 18 years ago, I was a senior in high school and about 17 when I taken serious about my back pain. So I guess my first sign, that I ignored, was a growing deep deep ache in all of my bones, but especially in my back. Finally, at 17 years old, I couldn't contain all the pain in my back inside me, keep calm and carry on and all that shit, so I started going to the ER\ED. I'd been checked for scoliosis, so I thought it was because of working and building in my HS theatre program, and I also had a physically demanding job at our city's zoo. My second sign was I actually grew to 5'3", but then I shrunk down to 5'1". Post-surgery, with my spine straightened and fused from Thoracic 3 to Lumbar 5, which is like 80% of your spine, i am 5'6" on a good pain day. Strangely, my mother, with no professional medical training, figured out what my disease is and paid for the test and films out of pocket, because insurance said I already had found no scoliosis. What I have was then called Schuerrmann's Kyphosis, now just called Schuerrmann's Disease. They think Richard III had it, why his back was arched and deformed, if anyone cares
1:54 My heart goes out to that person. I also have Ehlers-Danlos but the very mildest form, meaning my joints have extra flexibility. Someone could try twisting my arm behind my back and I wouldn't yell in pain (I have a younger brother, so you know how this happens). I've read about others who have the more serious form of the disorder, and it sounds horrific.
Story 4 reminds me of a friend’s sister’s story. She was having very bad headaches to the point where she wanted to smash her heard on a wall. She went with her father to hospitals in our country but they didn’t find anything and said she was fine. Her dad was feeling something wasn’t right at all so they flew to Turkey (the country they’re originally from). When they got to a hospital, the doctor saw what she had and was shocked she was still alive. She had a tennis ball sized tumor on her brain and immediately went to surgery. She’s okay from last I heard thankfully
Ehlers-Danlos type 1 here. I'm 46, but I feel more like 110.
13:05 (The one with epilepsy). I'm epileptic myself and I get the "daydreaming". It's like being awake but unconscious at the same time (or a lucid dream but the other way round).
My arms twitch/tense up. My mum said it was really bad as a kid, when sitting cross-legged on the floor watching TV, I would lean forward so far that my chest was on my legs, my arms would also extend and twitch and my breathing would sometimes stop. This is also linked in with the daydreaming where I was not aware it was going on until I was called or I was hadn't taken a breath for so long that I was in danger of passing out.
I wasn't diagnosed until I had my first grand mal seizure at 20. The doctor who diagnosed me said that all the episodes where I tensed up or daydreamed were "mini seizures" and also said that If I had heard ringing in my ears (tinnitus) without an obvious cause, then it was probably related to the epilepsy (I had always thought that was normal).
Another thing was that the cause was fluid on my brain and given that I have not received any head injuries, and my birth was labelled as "traumatic" because I had been fitting on my right hand side (I was in ICU for nearly 4 months). I'm a Neville Barnes baby and there is scar tissue on both of my temples. So the running theory is doctor squeezed too hard causing brain damage.
The hospital itself has a reputation for medical negligence. Also they told my Mum, who is also epileptic that Epilim was not an issue for expectant mothers. Epilim was linked to birth defects nearly 50 years ago.
I get the pleasure of watching my dad slowly fade out. He has end stage COPD, heart disease (he’s had a heart attack before), and diabetes which he has told me is seriously out of control. He can barely walk the length of a couch, and I’m not exaggerating when I say that, before he has to stop, panting, trying his best to catch his breath.
He’s 69 years old and we’ve often joked about how he should pass away before he turns 70 so he can go out 69-ing.
I’m not sure anything else about this entire ordeal is worse than his neurological issues, though. He’ll get random shooting pains not unlike that of a heart attack, which he can completely vouch for. His mood will rapid shift or his personality will change altogether from sitting to sitting or even in just one meetup. This has led me to suspect he may have some degree of cerebral hypoxia due to his COPD. After all, the last I heard about his assessments, his lung capacity was at 23% and that was six years ago.
That all in consideration, having been watching him slowly deteriorate, I honestly wish him relief. I know he won’t improve, not just unlikely, it’s definitively impossible. Which sounds pessimistic I’m sure but I consider myself more pragmatic, instead. I wish him release, for his suffering to end and for him to finally be reunited will his late wife, me mum. She passed away in 2016, and I don’t believe he’s been the same since.
He may drive me absolutely nuts at times but I do love my dad, even if he doesn’t exactly support me for my identity or sexuality or what he perceived to be my religion. It’s more complicated than that. He’s all I have left from my lineage. His parents passed away in ‘73 (his mother), and ‘90 (his father), as noted, me mum washed away in 2016, and my grandma and grandpa passed away in 2022 and 2021 respectively.
I guess I just don’t want to be alone in that sense. Even though I have two kids and a wife, it would just feel extremely lonely…
I have Ehlers-Danlos Syndrome too, although without the digestive disorder, so it is unpleasant but not terminal. It basically means that all my connective tissue isn’t built correctly, making it easy to dislocate joints and causing my muscles to constantly work overtime to compensate, causing chronic pain and fatigue. I am 21 and feel like I’m 40. I was never able to keep up with kids my own age, even since I was 2 years old. For a long time I didn’t even understand that it wasn’t normal to be in severe pain when physically tired. I even had a muscle biopsy done when I was a small child to make sure it wasn’t some kind of MD. It wasn’t until I was in my early teens, in and out of physical therapy for miscellaneous pains all over my body, that a young physical therapist finally noticed my hypermobility and suggested we look into EDS. Thank you Aaron, you changed my life.
Hey there fellow Zebra! Isn't it crazy that some people wake up without pain and don't have to think about how they move so they don't sublux something? Absolutely wild. Sending you lots of love!
@@pixitje Lots of love to you too!!!
i have EDS as well. i'm only 14 so i might not have taken the full force of the disorder, but i am forever grateful that my symptoms are only mild (joints have hypermobility and ache a lot, especially in use)
@@BunnyBoing It's really great that you were able to get a diagnosis at your age! I remember being in middle/high school thinking that I was just lazy and uncoordinated (well, I was but that wasn't the main issue lol). Be kind to yourself as you get older! I'm so glad that your symptoms are mild!
I potentially have EDS as well (in the process of getting diagnosed). I also have POTS and gastroparesis. It's such a nasty thing to experience. I hope you're doing well!
I was literally JUST thinking i had watched all the interesting vids on this channel but then i see a new post🙏🙏
Im glad my dad survived the lung cancer. And thyroid cancer. And widowmaker heart attack... He certainly had a lot of these symptoms told but i am elated to say hes improving
Videos like this always hit close to home. I'm not diagnosed with anything terminal, but I have multiple chronic illnesses that I will have for the rest of my life. The reality of being disabled is absolutely crushing sometimes. I can't imagine knowing you have an ailment that could kill you at any time. The closest I think I can relate was when I was being investigated for cystic fibrosis last year after I got a spontaneously collapsed lung on top of everything else. When my sweat tedt came back as borderline and I needed more testing, as first it was more "oh great, ANOTHER thing." But after reading up on it and realizing how drastically it can affect your lifespan, I was terrified. Luckily, I'm only a carrier. Currently deal with the affects of gastroparesis, GERD, POTS, migraines, and possible hEDS. I actually just had a feeding tube placed on the 20th of December. None of my conditions are technically fatal, as I said, but there are many days where I do feel hopeless. I send so much love and well wishes to those who are suffering from chronic illnesses and terminal conditions; I see you, and I understand your pain, at least to some extent.
My disease is not terminal, but it is chronic, and it has almost taken my life multiple times. I am thankful to be alive! Here's some of my...very long...story:
I have Crohn's Disease, and I was diagnosed when I was five. However, Doctors would constantly argue that my symptoms didn't "line up" with Crohn's and tried to tell me, a literal child, and my mom, the only one who could put my pain into words, that we were faking everything for attention. I was told they'd remove my Crohn's diagnosis from my records by the age of 18 if I didn't have a flare-up.
Come 2018, I was 17 and in severe pain that I had put up with for years at that point, unable to keep food down. I was in extreme danger, my lab results made that clear, so I was finally consulted by a surgeon who looked over my scans. He was a very kind and talented surgeon, but he underestimated how much damage my body could do to itself, in part thanks to the scans being unable to show the full story.
"It'll be a quick, 45-minute procedure," my mom was told...cut to 4 hours later, with her being informed by a nurse that things were, indeed, "Much worse than expected."
Three sections of my small intestine had died and caused strictures, which were removed and my small bowel was resected- I have a very cool and disgusting picture of the surgeon and nurses holding my dead intestines!
I very well could have died, whether of malnutrition or sepsis...but the latter is an upcoming story, haha!
The surgeon told me that it was indeed Crohn's Disease, but certainly not the regular kind. He said my type of Crohn's has a >2% chance of occuring, as mine wreaks all its havoc only on my small intestine rather than my entire GI tract.
I did great for a few years! I was put on IV immunosuppression therapy, but...eventually, after moving between three different kinds, they stopped working.
Cut to Summer 2022, I had been in excrutiating pain and on steroids for months, and, suddenly, in my sleep, my small intestine perforated! I woke up from the excrutiating (and I mean EXCRUTIATING, the worst I'll likely ever experience) pain and threw myself onto the ground, dragging myself to the bathroom because I was deliriously convinced it was just gas pains, LMAO!
My friend asked if I was okay after minutes had passed, and at that point, I felt and knew something was severely wrong inside of me, so I asked them to get my mom for me.
We rushed to the ER and, after a horrid 40 minutes of waiting despite it being a slow 4 AM, I was finally seen and told the great news: I was going septic, as my small intestine had burst open. It certainly explained the pain...
The nurses and surgeon didn't know if I'd wake up, if I'd have any lasting damage if I did, and my grandma asked my mom what she would do if I died. I don't recall many things, as I was drifting far from consciousness, but I do remember hearing my mom respond, "Then I would have gotten to spend 22 years with the best daughter I could have asked for." In my daze, I also apparently sat up and told my mom, "I will not let this win."
And I was right. I woke up fully a day after surgery (though apparently I conversed with some of the nurses while I was still unconscious, haha), tons of IVs in me and my central still in my pelvis...which ended up causing a bloodclot, woops! I eventually was able to start walking...very carefully...and recovering until I suddenly had to be rushed back in for a second round of emergency surgery.
A hematoma formed at the site of my surgery, and it hurt bad! But all my surgeons were amazing, absolute joys to talk to. I woke up much quicker from that second surgery, and my body got back on track to recovery as well. I think it wanted out of the hospital just as bad as I did.
I eventually said goodbye to all the wonderful ICU and step-down unit staff and was wheeled out of the hospital on June 24th, 2022. The blue sky had never been more beautiful and the warm summer breeze felt heavenly.
It's been a while since then, and I have an amazing GI doctor who makes sure to take extra care with me and my condition. He's genuinely amazing. He and my surgeon stayed up brainstorming treatments for me as I laid in the ICU, and I've never felt like I'm in better hands!
I've been in remission since, and love to live. I'm happy to be here, happy to share my story, and so happy to still be at the side of everyone I love.
Thank you for reading my novel-sized reply if you see this! Videos like this just inspire me to tell my story. I'm often told I'm a really strong person, but there's many days where I mourn what life could've been like if I didn’t have my chronic illness. It's hard to be "strong" sometimes.
I've had 2 feet and 6 inches of my small intestine removed in total. I can't absorb nutrients as well anymore, mainly iron and B12, but those can thankfully be remedied with infusions/injections! :)
TLDR; I'm sick forever because my immune system has beef with my small intestine on incomprehensible levels. But I'm alive! And I'm doing well. And I hope to keep doing well.
My brother has Ehlers-Danlos syndrome but it's not as severe at that. That's scary
I wish I could trade places with one of these People, who want to be alive. It'd be a good way to go knowing that in the process I gave someone who wants to be here more time. Meanwhile I fundamentally hate being alive- it's not a Mental Illness, it's nothing a drug can fix- the reasons I see things this way make it impossible to 'fix'/change. Life is like Poker- most hands are foldable junk.
You being born and alive is a miracle. You just gotta find your path and success.
Ah my daily dose of mortality contemplations
I wonder if the second story has vascular type because all EDS types have normal lifespan except vascular type. It is a spectrum and some people have it worse than others. She may have gastroparesis or cyclic vomiting disorder - both common in EDS. Also, I’ve never heard that EDS “eats the collagen”. I’ve always been told it produces faulty collagen. I did many papers on this disease because I have it (not the vascular type). Hypermobile and classical types aren’t thought to be that rare anymore. Of course, there’s an issue deferntoating between hypermobile spectrum disorder (my friend has this) in which it doesn’t affect your body systemically but many unknowing Drs diagnose patients with this. Both my daughters and I have EDS and all of us have had issues since birth. It’s hard to get a diagnosis but we have a geneticist in our town so it was easier to get appointments and get diagnosed.
My uncle had severe back pain and ignored it for at least a few years. He thought it was just arthritis from standing and we have family history of crippled backs. By the time he finally went to the MD to check it out it was too late. He had a cancerous tumor on his back that had spread. They tried to operate but closed him back up because they said it would have done more harm to try and remove the tumor. He only lived for about another four months and passed at age 69. If only he had gotten checked out sooner; it makes me sad to write about it and remember what a talented person he was. Brilliant and so talented; this should not have happened.
I had had pain in my right leg for a loooooong time but I never thought it was something severe. I mean… it is ”just a leg”. It was discoloured (burgundy/purple)and got wounds now and then that had troubles healing. I did go to the dr’s quite a few times, but they all just gave me antibiotics which didn’t help at all. Then, one night in the beginning of the pandemic, the pain got so intense I was writhing in pain and… I don’t know, I just knew something was up. It turned out I have a rare disease that has to be medicated immidiately or it becomes fatal. It took months before I got the proper diagnose but unfortunately, while waiting my body got really beat up. I have accepted my situation now and I’m okay with it (as weird as it might sound).
Sooo lesson learned: if you really feel like something is wrong with you, don’t let doctors brush your concerns off. Nobody knows your body better than yourself so trust your instincts and stand up for yourself.
paralyzed toes ... I have them too since birth. But because of another neurological reason. Sadly it can never change.
Not me, but my Popop had all sorts of problems before he was diagnosed with leukemia when I was 16. He was fighting skin cancer and type II diabetes. The doctors said his diabetes would kill him first before the cancer.... but the summer of 2020 he was diagnosed with leukemia. I remember going into the hospital and he was awake and talking with us just to be intubated and on life support in the next hour. I miss him dearly and wish he saw me graduate and get married to my highschool sweetheart.
My grandpa died of cancer in 2006, when I was 5, and though we don't know what kind of cancer it was we think it was lung cancer. How he caught it? His back hurt when he was doing garden work. The cancer was everywhere and he died only a few months later.
Oh, hey. we're the same age and both have grandpas who died the same year. Mine passed fron his 7 billionth heart attack that he ignored though
It wasnt me but my mom. Ive heard stories throughout growing up without her after she passed when i was 12. It started with lumps on her breast and they can only speculate how long it took for her to get it checked because it had gone on for longer than we had initially thought. Sge went through the entire year from almost start to finish in the hospital. They thought she was cancer free the night of Halloween only to later find cancer elsewhere. She had 4 types of cancer, including acute leukemia, a terminal form. She went back a couple days after Halloween and died a week before her 38th birthday in December. I miss her every day and wish she had gotten help sooner. She might still be here if it had gotten treated sooner
Re: the person with Ehlers-Danlos Syndrome, there are different types of that condition. Unfortunately, OP had the worst type, vascular, which damages the heart and blood vessels. The other types don't impair life expectancy.
Terminal illnesses I've been diagnosed with are a whiplash (nerves damage) and MDD (major depressive disorder). Both severely changed my life as I was now both physically and mentally challenged. I somehow still attend a job and try to make the best out of my life despite my frontal lobe and neck deep frying itself.
My dad is terminal and I can't even remember anymore. We started this off with "hey, you have liver cancer but we're going to treat it and you'll be on the list for a transplant." Great we thought. The next day, my mom had a stroke. She came out seemly perfectly fine. Went a month and a half later back to the hospital (its 2hr from us that they sent us), day before we went my cat died after spending half the day at the vet for what I thought was just her kidney disease, everyone missed that she had so many issues. Go to London the next day, treatment options, great! Next day, mom is in a coma and dies 4 days later from another stroke. Fast forward to about 2 months ago. Found out cancer is now in his bones and we're just trying for quality of life at this point.
I'm pretty sure it was side pain he was getting where his liver is. The terminal part started with really bad pain in his leg, then both.. It's been a lot. Everything in the span on 9 months. 🙃
As both was mentioned in this video I wanted to add my experience w both epilepsy & hypermobility spectrum disorder. HSD is like a less severe collagen deficiency than Ehlers Danlos Syndrome. Seizure disorders are way more common in people with EDS. I have very weak bendy & clicky joints , thin fragile skin hair & nails etc
Focal seizures are very hard to diagnose bc you have to be hooked up to an EEG whilst it’s occurring. I had my first Tonic Clonic ( shaking on the floor type) at 18 and my life was never the same (now 24). I had to give up my dream of going to uni , can’t drive , independence is limited , no energy , no ability to work etc. By far the worst effect is that on memory as it effects speech & grammar so my disability is apparent. I used to be hyperlexic & academic now I struggle with the basics. I find I can’t follow threads of info or pad out any thoughts. Brain fog really is an apt name for it bc it’s like being trapped in a world of half thoughts lol
My official diagnosis was Idiopathic generalised tonic clonic with possible focal onset but also Catamenial which means menstruation is one of the biggest triggers. For any women reading this pls advocate for yourself bc I went through 5yrs of 1-3 seizures a month doing fuck knows what damage all bc my neuro insisted periods weren’t a trigger & taking meds that didn’t work bc “it usually works for everyone”.
It is immensely depressing not being able to form new long term memories , I can remember early childhood better than the last 5yrs. Unfortunately the things I do remember are negative and your brain gets stuck in thought loops where it replays over and over basically torturing itself. There’s so much to rant about tbh. Fuck epilepsy.
My brother has had multiple things wrong with him throughout the fourteen years of his life. First of all he has severe autism, which definitely makes it hard to live with him. He has cysts on his spine that occasionally have to be drained. He has (as well as me and most of my mom's side of the family) has Von Willebrand's disease which means our body takes longer to clot, which leads to heavy menstrual cycles, easy bruising, and recurring bloody noses. My brother also has a certain type of focal epilepsy where his body just kinda pauses like he's spacing out. And finally when he was born he had cancer (either in his gallbladder or liver, I can't remember) and they didn't find it until her was about 5-7 months old. They said he wouldn't live to be a year old. He kicked cancers ass and survived. The doctors then said he wouldn't live to 10 since in cases like his the cancer usually comes back and kills them later. But once again, he defied the odds and is still kicking.
I lost both of my parents to cancer they both died at 67. My mom a few years after my father, she missed him dearly.
When i was 10 years old, i got pain in my left hip. my parents put it off as just some pain because of the constant sporting i did back then. it wasnt, we went on 10 visits by a doctor and no diagnosis. the 11th visit we had a different doc and they send me off to the X-ray room whitin seeying me walk for 10 seconds. i went and i got back my diagnosis. Pertes. its (in my home coutry) a super rare disease, whit only 1 in the 90.000 people having it. it was super painful and i couldent do anything from depression for a long time. i camo back up and i waited 2 years for it to get better, and then it hit me like a truck: i will NEVER get better. i was very sad. i was in constant pain. there was almost no sleep i could get due to the pain. i only could swim and that was something fun for me, but that enden when someone had a heart attack and died in front of me. now im just... depressed. im 13 now
So fascinating. And good commentary! I really like your voice.
8:18 this one is freaky because it's hard for even normal people to move anything except their pinky and big toes.
Yeah I can move all my toes its just that the ones besides pinky and big are impossible to move by themselves.
I'm not the only one that has this right?
My uncle was a stubborn dude who wouldn't go to the doctor unless something was absolutely wrong. He one day was at work and, in his words, pulled a muscle. His back was hurting and for the next few times we saw him, we took him to get a pain prescription, and he came over after work and had a lidocane roller he was putting on his back. That was the last time we saw him before covid and quarantine prevented us from even leaving our house. He called my mom one day and he told her he was actually at the doctor's. His back pain hadn't gotten any better and he was starting to feel worse physically, so he went to the doctor. He called after that and told my mom the doctors had found a mass on his lung. They went in for a biopsy, but he never even woke up from the anesthesia. In the barely a week he was in the hospital, the mass on his lung had gotten bigger, and it was literally pressing against his heart. The lung cancer he didn't even get to know he had killed him. The back pain we later found out was no pulled muscle. It was referred pain of the tumor in his lung.
Heard the beginning of story 2 and immediately knew it was EDS. I have EDS as well but a different, “less severe” type. POTS (postural orthostatic tachycardia syndrome) is a very common comorbidity that goes along with it. I have a service dog thankfully and she helps a ton but even all of the meds and therapy in the world won’t be able to completely cure me. It sucks having to miss out on some life things and coming to terms with the fact I’ll have this my entire life.
I knew as soon as I heard it as well. I don't have a confirmed diagnosis, but it's being investigated currently. I have confirmed POTS and gastroparesis, and when I brought up my hypermobility to my doctor, she referred me to a geneticist. Story two was heartbreaking, and honestly quite scary to hear. I don't think my case is that severe if I DO have it, but it was still scary to hear.
your immune system turning on you is one of my biggest fears, it can attack the eye fluids as well which can make you blind in severe cases.
the first story: "I felt better knowing it wasn't leukemia."
My thoughts: You immune system is attacking your blood... Isn't that worse?
Glad they survived.
Last one, CJD is known as mad cow disease when it happens to bovine.
That "/ were" at the beginning😬
This isn't a terminal illness, but an injury. I remember when I was a little, maybe 3 or 4, I had a spiral fracture in my leg. I cried at first, but stopped after a few minutes. My parents brushed it off as a bruise or something. I walked around on that leg for about a week, when my parents eventually noticed that I was limping. They took me to urgent care, and were shocked to find out my leg was fractured. Years later, they told me that they never thought I had literally fractured my leg because of my reaction (or lack thereof). I still have the cast in the basement.
I've gotten 4 autoimmune diseases in 9 years, the Crohn's was really obvious, then I got an autoimmune seizure disorder, then eye inflammation, and my last seizure a year ago they took a brain sample and found my 4th disease but thankfully I don't notice that one. So I have 2 disabilities and no one would know. Hearing that seizure story was interesting. I've had several Focal seizures, but they're mainly tonic clonic (they changed the name from grand mal)
Wow.. You just never know always good to be safe then sorry. I am currently dealing with some thing and stumped because I’m not getting better I’m getting worse but no one’s seems to know what it is. I keep getting bronchitis or pneumonia or Covid. But it’s been like now every other month I’m getting sick and I’m now down 25 lbs and night sweats and aching. I can’t figure it out. I have a weird bump on the back of my shoulder it happened in august when I literally fell asleep for eight hours I saw so cold but yet it was 93 degrees outside and I slept with blankets on me and yet here I am deteriorating and no one knows what’s going on. Odd.
@tatianna8214 - sounds like Non-Hodgkin Lymphoma.. Demand scans - xray, ct, mri, or pet. You are your best advocate. Keep fighting to get tests, scans, etc. Survivor here. Best wishes to you.
Holy hell, save for the grammar, I could have written that. In all ernestness, I hope you find answers swiftly.
The second one scares me because I also have EDS and share symptoms such as passing out from showers and not being able to do things. I’ve been diagnosed with disautonomia but it doesn’t explain the symptoms I have that are similar to that of hypoxia (lack of oxygen) and my rapidly fluctuating heart beat. My doctors know all my symptoms and stuff and I’ve seen many doctors about this so if I had that, they’d have figured it out and told me but still.
Oh yea and I’m chronically anemic. If I don’t supplement my iron it PLUMMETS. Also joint pain which has been attributed to the EDS. Also maybe tiny stress induced seizures causing me to just fall asleep for a while and cannot be woken. Normally I can’t sleep at all and have to take like 4 different meds just to be tired so randomly falling asleep is even more abnormal. I’m getting and MRI and EEG soon so that’s good but I’ve always been a medical mystery
Not a terminal illness, but one that will be with me all my life. I have a medical condition called P.O.T.S it's mostly shown in older people. But it's the worst thing to have when you have to give up the sports that you love; because if you don't then you get a trip to the hospital because you had fainted.
All of these things are why I believe the human body is a terribly flawed design, and should be replaced as soon as we have the technology to do so. The sheer variety of ways our bodies can tear themselves apart for no reason never ceases to astound, horrify, and disgust me.
Man I'm glad when I was sleeping alot 16+ hours it was just a combination of an painful but relatively harmless auto immune disease and severe sleep apnea
Heart attack in very sporty person... They fixed it... One week later his heart stops again, 60m cpr, nothing autopsy comes, his heart just ripped itself apart, there is nothing you can do about that, its instant and unless you are on the operation table 100% fatal (on the table they said its a sub 5% chance to survive)
Life is short and sport might kill you.
Sititing hear listening and story 13 comes on I have all those symptoms but not as bad thank you op
My grandmas best friend started to act weird, first it was just little things said in passing, but it got worse and fast. When she made 50 sandwiches in the middle of the night, for his already dead sons volleyball team, which he was part of decades ago in his teens, she realized too she had issues. She died just few months later, grandma on her side. Turns out she had Creutzfeldt-Jacobsen disease, prion disease, basically the same as mad cows, it takes one in a million over 70yo, reasons are yet unknown. Worst lottery win ever! RIP Siku, grandma is soon joining you (dementia at 91), take care of her :)
bone cancer story: by this description it is a malignant growth of the bone, bone cells growing on the bone like barbs or corals or tiny grass. Or it could be below the surface and causes fractures.
Compared to that most people think of bone marrow cancer, that inhibits blood cells, hence anaemia as symptom.
Overall, grim stuff.
CJD took my granddad. I am so sorry, OP - it’s a horrible disease.
I have seizures due to a rare vascular neurological condition (vascular malformation) called Cavernous malformation. Took 7 years to get an answer. I had to have emergency surgery for it.
I had a bone tumour in my right pinkie finger. It was benign but it led to my finger breaking.
I could have developed it while in the womb, doctors figure.
I also have a b12 deficiency and they think I have pernicious anemia. No as bad as the person in the story but they still did lots of blood tests and gave me a b12 injection to hold me over until they got more info. My b12 was at 74 and the next week they tested it again and I had 63. The minimum healthy amount was 200
The B12 story I had a strong feeling about it being B12 because I have a variation of it! My mother does too which is what I kept telling my doctor at the time. She literally just got mad and told my partner that I need to stop making myself paranoid and focusing on my mother's health issues like they are my own??? A specialist finally checked my B12 which was also critically low but likely not as long as OP's so I recovered from most acquired issues over my deficiency. Unfortunately, certain deficiencies can sound like anxiety or depression and lead to doctors making assumptions when simple blood tests could really rule it out.
I might need to get a blood test...
I'm concerned now.
@kaden-sd6vb Always better to check if needed! If it's because of anxiety or depression symptoms make sure to mention that you want to make sure there isn't a physiological reason for your symptoms so they'll check other things in your bloodwork too like thyroid since it can definitely cause those too.
Less than 1 hour party???
Made it here in 23 minutes
This is me just inserting myself but for some reason no matter how much I eat I just can’t gain weight. It’s starting to piss me off.
Why MRI over x-ray? Because they first thought the issue was muscular and not skeletal. Muscle and tendon injuries don’t show up on x-ray.
17:51 and this video was uploaded exactly 6 years later. Was that intentional?
I'm afraid that my dad will eventually get a terminal disease due to his constant smoking, it's *very* likely he'll die before the age of 80. He's throwing up mucus from his lungs everyday and I'm trying to get him to see a doctor, but he never listens. 😢
I wouldn’t say terminal, but then again it’s chronic so I’m dying with it lol
Basically since 4th grade, my left kneecap would randomly dislocate. The first time was when I was on a jungle gym and trying to pull myself up using just my legs. I did it, but then my left kneecap dislocated. The pain was excruciating, and I thought I broke it. The whole day I was stuck with a dislocated knee because the school nurse didn’t know why this happened.
Fast forward to two years after I graduate, and my kneecap dislocates twice a year. Well I was with an uncle when it happened again, and he taught me a quick way to fix it. As this point my dislocations didn’t hurt, but it did make my leg go cold.
Fast forward to about 2 years prior to me writing this, and suddenly, my right knee dislocates. That was the signal to go to the doctor. It turned out the ligaments in my knees are loose, with my left knee ligament being the looser of the two (which is why it started dislocating first).
Today, my knees dislocate once a day, but simply swinging my leg out fixes them. Not really painful, but very annoying.
Just lost mom last Christmas. Get your colonoscopy folks!
number 3 Basketball sized tumor on the liver.
My dad had such a tumor except it was larger than a basketball. Surgeon was able to remove it University of Wisconsin Madison Hospital, I think, I could have been St. Mary's. Anyway he suffered several strokes ovet the next 16 years and was in the ICU for 40 some days. at one time. We eventually lost him the day before my birthday April 18, 1998.
Instantly knew the B12 one was B12 caude it sounds like my symptoms but worse. I was born with the MTHFR mutation so its very hard to get enough b12 so need injections.
I noticed I walked like I was drunk but wasn't turned out I have multiple sclerosis
Oh I ain't know this was new!!
I didn't know Ehlers Danlos disease was so bad it can kill you.
my friend has ehlers danlos syndrome and wants to play football but he cant, big fan of the steelers tho
I have disease that similar to MS, but much rare, HSP.
2:59 did he just say “severe” using the painscale meme’s voice
Calvinist malformation (aka bleeding of the brain from dead brain cells) this condition is hereditary I inherited it from my dad while not life threatening it is debilitating and since it’s in the brain you won’t know how it will affect you. We never knew that i had it i went in for a hearing test i failed and unfortunately that was the only thing that warned us something bad happened because the next day thanksgiving day I had a 5 minute seizure in front of my elderly grandparents and my dad had to save me from falling on the sharp end of the tv stand I almost cut my neck open in the fall had my dad not catch me much of it was a blur. I lost all my positive memories of my life I can only remember my negative experience the only positive memories I have were the things that were of my hobbies (museums and art) and a feral black cat I named cynder (I miss that feral queen) I also have insomnia and depression and short/long term memory loss I can’t even remember people names at times and it’s embarrassing. And when you add autism and weak immune system to the mix yeah you not only feel like an outsider to everyone but the feeling of being a weakling is also fun to have. I have my surgery in 2013 and here I am 2024 feeling like I’m just living and nothing more despite those around me telling me otherwise.
and people who say i know what you’re going through it’s not true you don’t know because everyone individual is different. if we can put the saying walk a mile in my shoes to the people who don’t know what it’s like to be in a sick person position I can imagine people would be more understanding and more carful of their words and actions.
hello I would like to say that the depiction of Ehlers Danlos here is completely false. Ehlers Danlos is a connective tissue disorder that has a collagen mutation NOT your body eating itself!! It is also not terminal most of the time.
I like your videos, but the constant moving screen is making me dizzy and I must close my eyes to listen to your videos. I may have to stop listening to future ones unfortunately.
Here
😂❤😮
that's either a really weird reaction or you pressed random emojis on the top row of your phone keyboard
No no first
Im glad my dad survived the lung cancer. And thyroid cancer. And widowmaker heart attack... He certainly had a lot of these symptoms told but i am elated to say hes improving
Im glad my dad survived the lung cancer. And thyroid cancer. And widowmaker heart attack... He certainly had a lot of these symptoms told but i am elated to say hes improving