The human body can be comparable to a vehicle. It will develop mechanical issues over time, many of which are neglected because they aren’t easy to identify. It’s not until you visit a mechanic that you finally figure out exactly what the problem is.
Similarly, these people have dealt with illnesses they’ve brushed off as nothing serious. It wasn’t until they were checked out that they found out what was wrong with them, leaving them in shock, disbelief, and eventual relief. However, some weren’t so lucky.
These anecdotes were responses from a recent Reddit thread. If you went through anything similar, we would love to hear your stories.
#1
Lived with intermittent but debilitating hip/knee/leg pain. I was a daily runner so every doctor diagnosed it as a symptom of some muscle or skeletal issue. I had steroid injections and PT and wore knee braces and nothing helped. It got so bad that I was limping two weeks out of the month. I didn’t think it was a physical injury because I could still move and run, but what did I know?
Finally, I thought about the cyclical nature of the pain and wondered if it had something to do with my periods. I researched it for weeks and found a SINGLE study where a woman had endometriosis on her sciatic nerve and was experiencing the exact same pain. I can’t take birth control pills because of how sensitive I am to the hormones, went through a few gynecologists who wanted to put me on the pill or put me into chemical menopause and finally found one who listened to me. You can’t definitively diagnose endometriosis without seeing it and you can’t see it without surgery and she scheduled the surgery.
My insides were all pink and healthy except for one small patch of endometriosis.. on my sciatic nerve. She burned it off and I’ve been pain free ever since. Ten+ years of pain for something resolved completely in a 60 minute endoscopic surgery.
Image source: Able_To_Change, Kindel Media
#2
My husband had a series of bizarre symptoms. Left side of face would swell, then mysterious rash on entire right side of body, lumps on his wrists and hands that almost looked like stigmata. Saw tons of doctors, no one could figure it out until a very brilliant doctor said “I think I know what it is, only 7 people in the US have it.” Super rare blood cancer. It was hell but he made it through! 10 years cancer free.
Image source: Turbulent-Pension-31, Andrea Piacquadio
#3
Chronic leg/hip pain.
Stood up from my desk on Christmas a couple years ago and my knee went *”CRACK!”* Instant pain. Putting weight on that leg felt like my knee was either bone-on-bone or was full on mashing a tendon/ligament that had slipped into the knee joint.
First doctor couldn’t tell me much beyond it maybe being an old MCL injury flaring back up. Said that, *mechanically* speaking, my leg was fine and I shouldn’t be in pain. Lots of rest and ice and a few months later: pain is still hanging around. Had to get a cane to walk. Couldn’t keep my job as a housekeeper.
Second doctor parrots the first. Likely just a persisting ache from an older injury from when I was a kid. Mechanically speaking my leg is fine.
Pain spread up the leg into my hips, and down the leg into my ankle. I start getting searing hot spasms on pain nestled in the small of my back, burning down my leg and setting my toes twitching.
Third doctor parrots more of the same and recommends I see a physical therapist.
Physical therapist gives me the same speech. Mechanically, my leg is fine. My knee, ankle, toes, all moving as expected. My range of motion isn’t impeded. It just *hurts.* Constantly. Gives me some generic exercises and sends me on my way
The pain worsens. Even with the cane I start tapping out after about two hours of standing / walking. I have to get a wheelchair.
Fourth doctor, yet again, tells me the same. Gives me a recommendation to a different physical therapist. This physical therapist reiterates the same. Though they both acknowledge the Sciatic pain that had begun, with the physical therapist giving me some ab workout routines that didn’t really help.
A random blog post that appeared on my feed from r/disability sparks my interest. Talking about all my symptoms: pain that starts out of the blue, feels like the muscles in my leg are all yanking on each other and pulling themselves out of place, sciatic nerve pain shooting down the leg and setting toes aflutter, doctors and PT’s reporting that everything is in place, nothing out of the ordinary.
The blog post was about Iliacus Dysfunction. The shortening of the Illiac muscle deep in the hip, which leads to it warping your hips and leg. It was ringing every bell I could think of in relation to my disability so I looked up exercises for stretching and strengthening the Illiac muscle. Three months later and I’m out of the chair and off the cane, currently building up to running again.
3 years of constant 24/7 pain, finally come to a close.
Image source: CasualCassie, Getty Images
#4
I felt awful for years. Dizziness and lightheaded every single day. Fatigue. Could barely exercise or move some days. Mental fog. It was terrible. All my bloodwork came back normal. Was told there was nothing more they could do and that I should just move on with my life ..? They blamed it on my grad school life and told me to get more sleep and to exercise more. After sustaining repeat pregnancy losses years later, they finally did a full blood panel and a total workup. Turns out I had Hashimoto’s and had they just run a full thyroid panel that included assessment of my antibodies (given my very common and characteristic symptoms of thyroid dysfunction) it would have saved me years of discomfort and depression.
Image source: Captaindoctormo, Sofia Alejandra
#5
Started vomiting at 38. Cyclic vomiting randomly requiring hospitalization for a week or more where they tried everything to get the vomiting stopped. Lost many jobs. This went on for 13 years. In and out of the hospital, always to a gastroenterologist who could not figure it out. Went to my OB/GYN, it’s menopause. Had a hysterectomy, no more vomiting.
Image source: Cool_Wealth969, freepik
#6
Not mysterious but uncommon, I kept having random “drop attacks” which are severe vertigo attacks that occur in seconds. I literally dropped to the ground hard like dropping a sack of potatoes. Once on concrete while going for a walk, once while driving (hit a fence), the first time it happened I was sitting at my computer and face planted into my keyboard. Never losing consciousness. During this one year time span I also lost all hearing in right ear.
After an exploratory operation on my inner ear to relieve my extreme vertigo the dr found a very small tumor (the mri didn’t detect) on my inner ear. Biopsy was done they closed me up. 3 months later I had the tumor removed along with my ears connection to my brain. Severing the brain connection was the only way to prevent drop attacks forever. But completely deaf in that ear forever too.
Image source: NeutralTarget, freepik
#7
My dad was itching for months and the doctors were giving him meds for itching which didn’t help. Finally we got to an allergist who looked at his prior labs and told us to go back to his primary care dr and request a chest xray and come back to see him. Well the dr couldn’t get the xray approved even though my father was a smoker for 50 years. When we went back to the allergist, he told us there is an xray lab in the building and to get it done now.
Walked downstairs and had the xray. Which was only 20$. The xray tech walked out with my dad and told me to call the doctor right away. Which shocked me and my dad. We went back upstairs and the allergist said he will call us after he talks to the radiologist.
The allergist called me that evening and told me my father had a large tumor and he had lung cancer.
Image source: mydogisnala, Anna Shvets
#8
I spent years with random stomach pain, exhaustion and brain fog that every doctor brushed off as “probably stress” or “just IBS.” Bloodwork always came back “normal enough” and I started feeling a bit crazy about it.
Eventually one new GP ran a full panel that included celiac tests and it lit up. Proper celiac disease. Once I went strictly gluten free the constant nausea and bathroom drama slowly calmed down and I stopped needing a nap after doing absolutely nothing. It was weirdly validating to have an actual name for it after being told to just relax and drink more water for so long.
Image source: SendMeYourDPics, Ron Lach
#9
One problem was I kept masculinizing in puberty, so they put me on HRT to feminize.
Another problem was chronic abdominal pain since early childhood, and trouble urinating. They dismissed it as just period cramps.
Not a problem, just weird, but I had a big patch of differently-colored skin on my thigh. It was called a large birth mark.
Anyway, in 2021 a surgeon opened me up, and found a terrifying amount of abdominal adhesions from a surgery I’d never known about. (You can see a 4-year-old post in my profile referencing that, along with a brief “the surgeon found something odd” I’d added in.) *That* was the cause of my abdominal agony. Lots of parental lies broken apart and testing later, I was diagnosed with tetragametic chimerism. I had absorbed my twin in-utero (that ‘birth mark’ was their skin), and as a toddler, I was mutilated via IGM to “turn me into” a girl.
Image source: A_Miss_Amiss, Andrea Piacquadio
#10
Started having digestive issues. Noticed a weird lump in my abdomen, just below and slightly right of my sternum.
Ignored it.
Because I have ALWAYS been healthy.
Lots of other problems started popping up.
Almost passed out in my shop.
Next day, had my girlfriend drive me to the ER.
Stage 4 colon cancer.
70% compromised with pulmonary embolisms
Acute Cardiac Distress
Septic
Internal hemorrhaging
Acute anemia
Legs full of blood clots, dvts
Doctors have no idea why I’m alive.
Image source: UnintentionallyRad, Tima Miroshnichenko
#11
A lump on my throat that was just like a swollen gland. No other issues or symptoms so didn’t think anything of it. A few weeks later I had to go to my GP for another issue and my girlfriend hassled me to mention my lump while I was with my doctor.
They prescribed some antibiotics and when they didn’t clear it up they sent me for a scan and a biopsy.
Stage 2 HPV cancer in my tonsil. I’m glad my girlfriend convinced me to ask the doctor.
Image source: APez26, Antoni Shkraba Studio
#12
Was sick as hell for almost a year and a half. It was a constant flow of bronchitis and pneumonia from one fall to a spring 2 years later before I felt human again. I was in my senior year of college and this was before insurance until 27 years old times, so I was pulling 17 credits, working 25-30 hours a week and still uninsured and barely covering bills. About 4 months in I went to the ER when I coughed so hard I heard a pop and started bleeding out of my tear duct. I had inflammation of the lung lining and had cracked a rib and blew a blood vessel in a coughing fit. Left the ER with an antibiotic and a 3k dollar bill that would take me 500 hours of work to pay off. Eventually it went away.
Fast forward 10 years and I have a full chest MRI after an accident and they say I have ground glass nodules everywhere indicative of metastasis and stage 4 and a couple months at best to live. Got my affairs in order while getting multiple other opinions and at the second final opinion the radiologist made a really funny face and said that there was no progression in the last 4 weeks. Then she asked if I had ever been to the Midwest. Bizarre question because I live in TX and never mentioned my undergrad in WI. I said yes and she asked if I had ever been really sick and spent time in xxx city or xxx county. I had actually spent a weekend up in the area before getting really sick in my 20s.
That’s when she laughed and smiled and said she thinks I had an extremely rare fungal infection called blastomycosis. Almost all of the recorded cases come from this region in WI. So long story short, my lungs are a wreck and all scarred up, but this all happened 5 years ago. Count every wonderful day you have. Just found out about a brain tumor last week and Im going to beat that thing too.
Image source: m4dch3mist, cottonbro studio
#13
My mom had low back pain. Nothing new, she has had it for her entire life. We had also spent the days before digging up tree roots in the yard. Assumed it was a pulled muscle because all of us hurt for days.
It kept getting worse for mom. So she went to urgent care for a prescription for strong anti inflammatories but the pain wasn’t improving. After more than a week, she started to think maybe it was a kidney infection since the pain was in that area and she had a slight bit of discomfort urinating.
Back to urgent care. They said no infection, might be appendix, go to er. ER said no, just her pre-existing back problems, go home. After 2 weeks, my mom was still in pain and fatigued and getting worse. Back pain was spreading around the front into the groin now.
Back to ER. They admitted her and then said she had inflammation around her aorta. They called it something I can’t remember, but the symptoms did kind of fit. So they kept her for a few days and put her on steroids. She started to have less pain. Then they decided to take her off and send her home with instructions to follow up with a cardiologist.
After they stopped the meds, the pain came back even worse than before. She begged them not to send her home because something wasn’t right. They did anyways.
A week later, she went back to the ER. At this point she had no energy to sit up long enough to eat and was sleeping all day long. This time, they decided that she had an infection in her bones and transferred her to a hospital with an infectious disease specialist. He was great. He knew she was very sick the second he saw her and immediately got to work finding out what was wrong.
Turns out that her back pain was because of an abscess on her spine. He told us because of the placement, if it had ruptured, she would have probably been paralyzed. He also said her infection was so bad that she was very close to sepsis and would not have recovered.
They drained the abscess and started strong antibiotics. After about 9 days she was able to talk the doctor into letting her go home. She had to have a picc line with an iv bag of an antibiotic cocktail continuously. She ended up having to carry around an iv bag for more than 6 months. Double the time the doctor thought she would need it. The bacteria responsible ended up being a form of strep.
Image source: 1D0ntKn0wY0u, Ivan S
#14
My daughter was just 3wks shy of turning a year old and we were on our way to the beach house for Father’s Day weekend. On the 3ish hour ride there my hands and feet went numb. Chalked it up to the car ride. Over the weekend my symptoms worsened. Pin dot vision, I would fall/lean to the right when walking and now had numbness and tingles in the right side of my face and right arm.
We went home and went to our local ER. Was quickly discharbeing told it was postpartum depression and given lexapro & Xanax. Not even 6hrs later I was projectile vomiting, what vision I had left was double and I would completely fall over when trying to walk. Still had all the numbness too.
Went back to the ER and was immediately seen by a cardiologist b/c of the meds they had sent me home on. He put in for a MRI stat and walked down to watch as the scans came up on the screen. I wasn’t in the tube for more than 10mins and they were yanking me out, telling me they are transferring me to University of Maryland.
I had a massive bleed on my brain stem. Medical term, cavernous angioma. Once downtown at UMMC I underwent my first 15hr long brain surgery. I wasn’t given a good prognosis.
That was in 2005. I have since had 4 more major brain surgeries and bounce back from each one like a brand new person lol. I do understand I am extremely lucky to walk away from these type of surgeries.
My most recent bleed/surgery was January of this year. I am now almost fully recovered. I woke up w/ a trach and a gtube.
I have also been able to maintain my career while being sick which is in the healthcare field.
Image source: BrittAmber1106, MART PRODUCTION
#15
I spent 2 years going into my dentist and complaining I was in “got in a fight with Mike Tyson in his prime” levels of pain. I was told there was nothing wrong with my teeth, no other investigation was done. Went to my audiologist thinking I maybe had compacted earwax again and that was causing the pain. I was diagnosed with temporomandibular dysfunction in less than 10 minutes.
Image source: gothiclg, krakenimages.com
#16
When I was a kid (2000ish), I always had a cough. One day, I coughed so hard, I popped an abdominal hernia. After that was repaired, my mom started researching and taking me to doctors. Allergy tests all came back negative. Mom pushed the doctor to check for polyps.
“Are you a nurse?”
My mom’s like, no, but I’ve been doing a lot of research and –
“Is the coughing just bothering you and Dad when you’re trying to watch tv?”
My mom, who is the calmest, kindest woman you’ll ever meet, was like, if you check and can honestly tell me the cough is nothing, I will happily leave your office. So they checked.
I had polyps. That lead to a sweat test and finally, my cystic fibrosis diagnosis. Thanks, mama!!
Image source: Careless_Order5271, Engin Akyurt
#17
Alopecia Totalus. Started with random hair loss, then weird stuff with both my toe and fingernails, then in about 36 hours I shed all body hair. At the end of it my thyroid was just being a jerk throwing my immune system into overdrive. Still hairless for the most part.
Image source: Studio_Ambitious, Getty Images
#18
I started getting fatigue, and my right leg wasn’t “listening to me.” It got tired faster than the left leg. My face felt kind of weird sometimes too. At night, I would get horrific leg cramps and very vivid dreams. Over time, my hand felt tired just brushing my teeth or washing my hair. I went to multiple neurologists to rule out MS, tumors, Wilson’s disease. They said, maybe it’s a weird migraine aura. Maybe it’s fibromyalgia. Nothing showed up on examination or tests except consistently brisk reflexes.
It took a couple of years for the tremors to show up. Turns out, it was young onset Parkinson’s.
I was in my 20’s when it all started and 31 when I was diagnosed.
Image source: paintedbarn17, Luis Quintero
#19
Blood vessels in mainly my hands, but also larger ones, would inflate like little (painful) balloons burst. The bruises disappeared quicker than regular bruises. I always bruised easily aswell but that was the weird one. Spoke to GPs every so often, had some blood tests that always came back fine. Their conclusion was always “thats strange”.
Eventually it happened somewhere bigger. I’d had upper abdo pain, difficulty swallowing for 3 weeks. In and out of GP, 2 A&E visits, sent home, and then the massive aneurysm that had developed in the main artery to my spleen ruptured. I’m so lucky to be alive.
Everything went my way that night. Including an on call surgeon who realised my tissue wasn’t normal and made all the right decisions. And told me to get my genes tested, after I was out of ICU
Turns out I have a rare genetic condition called Vascular Elhers Danlos syndrome. There’s a few different types of EDS, mostly to do with joints. I just happen to have the rarest, shittest one that means my Vascular system and organs are brittle and can just tear at any time. Luckily my surviving family all tested negative, but it was sadly too late for my little brother 😔 if we’d known for him, he could have stood a chance.
Image source: Think_Shake_1646, Karola G
#20
I had terrible fatigue starting at 27. The (male) doctors pretty much patted me on the head and said “no wonder you’re tired! You’re just girl! You’ve got two little kids and you’re working full time! Run along now!!”
It got worse and worse. I was falling asleep while driving. Anytime I sat down. I went and got tested for narcolepsy. They said I had Idiopathic Hypersomnolence, meaning “we don’t know why, but you’re super sleepy… Good luck with that, and run along now!”
I saw specialist after specialist. I was turned away by everyone, with the same platitudes.
By the time I was 35, my teeth were rotting out of my head and I was having so much joint pain I could hardly get out of bed most days, and still so tired I couldn’t function. I had to quit my career. Finally, I googled all of my symptoms together and spent days and days searching and found Sjögren’s Disease. I made an appointment with a rheumatologist and demanded to be tested for it. My results came back with antibodies more than 4 times the limit for positive. The doctor had never seen numbers that high.
It’s an autoimmune disease wherein your immune system attacks everything in your body that makes moisture. Eyes, mouth, digestive system, reproductive system, brain, organs, the synovial fluid in your joints dries up. The average age of diagnosis is 62, and the overwhelming proportion of patients are women. The average time to diagnose is 10 years.
Image source: firstname_m_lastname, Ron Lach
#21
Last half of last year, I started getting really lethargic, tired, was losing colour in my lips and skin. Was out of breath walking from the living room to the bathroom (I live in a ground-floor flat. The living room to the bathroom is MAYBE 30 steps, no stairs), sleeping to 3pm from midnight the night before, napping in the afternoon, had no appetite, and when I DID try to eat, I managed maybe two or three bites before I felt sick.
Took me literally months before it got so bad that my parents noticed when I was visiting one day and nearly passed out walking from the kitchen to the couch in the living room (probably also about 30 steps, no stairs) and she forced me to get an appointment with my GP. I’d been assuming I was just under the weather (FOR FIVE MONTHS!) so hadn’t done anything. Made an appointment with the GP, who thought my symptoms were because of a middle ear infection that was clearing up, so I got some meds, went home. Took the meds. Didn’t get better after a week, so made another appointment. Different doctor thought it was vertigo because of the dizziness and now a whooshing sound in my ear. Gave me pills for vertigo, I went home, took the meds, didn’t get better after a few days, and I was now barely able to stand without wobbling.
Made an emergency appointment at my mother’s request, got seen about an hour later by a doctor I’d never met before. I puked in his sink. He took a look under my lower eyelid. He might have looked at my gums, but I was honestly mostly out of it at that point. He sent me to the hospital. I spent 12 days in hospital, and found out that I have megaloblastic anaemia. I can’t remember what they were measuring, but I needed to be at 61 to leave the hospital, and when I arrived, I was measuring at 13, so it, was, uh. Not good.
It was probably caused by a really bad 7-month menstrual event the previous year (I literally didn’t stop bleeding for 7 months) and I had tried to go vegetarian at the start of the year… but didn’t replace my meat with leafy greens, so was getting little to no iron in my diet.
Moral of the story is: I’m an idiot, I should have asked for help, and eating vegetables may have kept me out of hospital.
Image source: rihkuwo, cottonbro studio
#22
Neurocardiogenic syncope – sometimes my blood vessels just stop properly distributing my blood, basically, including to my brain. More a description than a diagnosis, but it’s helped to have the label because I’d begun to feel crazy. I would be doing perfectly ordinary things and then just slowly stop being able to do them mid-task.
It was really hard to convince doctors something was wrong because it was difficult to describe my symptoms. Your body has an internal sense of blood volume, but because we so rarely feel blood pressure drops we don’t really have language for it. From the outside, it looked like I would just start to breathe a little hard and then just…. stop whatever I was doing and lay down. When asked to describe the sensation, I had no words except that it “felt wrong.” It’s not even pain, though it does feel horrible.
Your body is sending you all these signals like need to take urgent action, but instead you find yourself moving slower and slower, like you’re in a dream. As the blood leaves your brain you become incapable of processing new information and changing your mind, and so you listlessly attempt to continue whatever you were doing last as your breath gets increasingly short and ragged until you sink to your knees, and then sprawl on the floor. It always feels like you COULD get up, and you WANT to get up, and you WILL get up RIGHT NOW except you don’t. A small corner of your mind is screaming in horror, ringing huge alarm bells and helplessly watching the rest of your body and brain take absolutely no steps to protect itself from catastrophe.
Now I recognize the subtler signs before it comes on me and go lay down, but for a while the inability to respond was the most dangerous part: people would find me in the snow, or on the stairs, or in the shower. I was in college when I first showed symptoms and it was hard to get around.
Image source: Competitive_Bag3933, A. C.
#23
Primary/selective immune deficiency- turns out I wasn’t just making it up or being dramatic about constantly getting sick in major ways lol I get my immune system replaced monthly via Ivig. In fact I’m at the infusion center now getting it.
Image source: Canonconstructor, JSB Co.
#24
I was sick as hell all of a sudden. Every organ in my body was affected to some degree. Liver enlarged, gallbladder was enlarged and super painful, severe brain fog, tremors, unsteady gate when I walked, extremely high BP (246/173) which lead to me being airlifted to a level 1 trauma center, intractable migraine headache, trigeminal neuralgia, digestive issues, diarrhea, nausea, etc. I went to the ER 6 times in 5 weeks. On the 6th week my eyes began to hurt and were red. Within 2 days my corneas were burning and my vision was very blurry. I went to urgent care and they said that I had abrasions on my corneas and to go to the ER if it got any worse. By the next morning I was completely blind. My husband took me to a different ER and I was referred to an ophthalmologist for an emergent appointment the following morning. They sent me to a specialist 100 miles away from home. After 9 weeks I was sent to an ophthalmologist in Boston who diagnosed me with acanthamoeba keratitis in both eyes. This lead to multiple complete erosions of my corneas requiring hospitalization, twice, for treatment with 6 eye drops every hour around the clock and several oral and IV medications. One of the eye drops cost $86,000 but was covered by a grant from a clinical trial. As it turns out, it originated from a systemic parasitic infection that caused all of my symptoms. I am extremely fortunate because only 3% of people who contract that infection live to tell about it. It took over a year to fully eradicate the infection. I was told that there was no way to determine where I contracted the infection. I had not gone swimming in a pond or river, had not been in a hot tub or pool, etc. The only lasting effect I experience is severe intractable migraine headaches approximately 2 times per month.
Image source: Equivalent-Patient12, Ksenia Chernaya
#25
I had a rash that would randomly pop up for 15 years. My primary dr gave me a medication for a nervous disorder. went to see a dermatologist who says “Thats is NOT any kind of rash I have ever seen go see an allergist”. The allergist looks at it and says “That is NOT any sort of rash I have ever seen!” go see a dermatologist. In the mean time I have begun to get sick with just about every meal and the rash is nearly constant and driving me insane. It doesnt respond to steroids at all. I eventually got so ill I couldnt get out of bed and the ambulance took me to the hospital. I have a histamine intolerance. That means normally tolerated levels of histamine in foods and the environment were building up in my system until the immune system read them as an allergy but it wasnt actually an allergy. Gave me a tacrolimus prescription for the rash, two antihistamines a day and a low histamine diet. Now I am great. But I lost 15 years of good health being misdiagnosed because no one cared to look beyond the obvious.
Image source: Alarming_Long2677, Curated Lifestyle
#26
Came home from Qatar after the World Cup in 2022 with a lingering cough. Went to the emergency room. When I told them I had ridden a camel while there, they freaked out and put me in isolation. They thought I had Middle East Respiratory Syndrome (MERS), a severe respiratory illness. It is a zoonotic virus, meaning it can spread from animals to humans, primarily through direct contact with infected dromedary camels.
Turns out all I had was RSV.
Image source: timboston, Brittany Colette
#27
One day when I was 15 or so, I woke up with too much back pain to get out of bed. Up until that moment, I was the girl with the kind of pain tolerance that got me yelled at by doctors for not treating wounds and broken bones as carefully as I was supposed to, so this was extra frightening to my family, who knew this about me.
It took until I was 19 to get diagnosed with fibromyalgia, partially because my high pain tolerance made me not always notice some of the more common and widespread symptoms. Turns out I also had some mental stuff going on regarding deserving proper diagnosis and treatment, which wasn’t helped by doctors insisting I was faking and/or “just fat and in need of attention.” Literally one doctor told my mom, “She’s just desperate for attention, if she lost the weight she’d get the attention she needs.”.
Image source: GenericNerdGirl, Curated Lifestyle
#28
After a decade of odd symptoms, including whacky blood chemistry and ultra low potassium, I was starting to develop some very bad symptoms. Marked obesity, unending thirst and hunger, incredible weakness, resting blood pressure of 190/120, etc. I felt awful and I’m grateful my wife was so supportive as I struggled to work and do chores. At my worst I was only able to walk about 100 steps before collapsing. It got so bad that my skin and insides were starting to show bruising for little reason. For some mysterious reason I was getting worse each month and it was accelerating.
I felt like I was sliding downhill for a decade. I got my estate paperwork in order and had conversations with my wife about the inevitable future without me. And was just about to sign a DNR.
Then one day I saw a new cardiologist and he said “huh. Ultra low potassium and other stuff like some hormone imbalance? This sounds familiar.” 3 minutes on the computer and he bet me that I had a tumor hiding on or as one of my adrenal glands. That afternoon a scan confirmed it. And it was benign, just sneakily poisoning me.
The best part is that removing the tumor has allowed my body to recover. It’s been over a year and I’m still recovering from years of damage, however my worst symptoms disappeared within a month.
Image source: WrongOnEveryCount, Victoria Romulo
#29
F31, I was experiencing loss of appetite, intermittent nausea and unintentional weight-loss for over a year (chalked up to depression and SNRI side-effects by psychiatrist and GP), bone-deep fatigue (could easily sleep 15 hours), worsening depression and insomnia (therapy, SNRI and CBT-I didn’t help), uncontrollably crying in the mornings (would even wake up crying), zero libido, gradual loss of armpit and leg-hair as well as body odor (didn’t really notice at the time), hyperpigmentation of hands and knuckles, gradual de-conditioning followed by lightheadedness and shortness of breath when showering, walking up stairs or short distances like to the mailbox. Then eventually came the heat intolerance and salt-cravings which I had for about ten days before sudden vomiting started. Suspected a GI-bug at first but after a week of vomiting and struggling to stay hydrated, a family-member (rightfully) forced me to book a GP appointment. I had a near-syncope in the elevator up to the GP’s office, because I couldn’t stand upright for more than 30 seconds. During that appointment my resting BP was 70-something over 40 and my HR 124. GP couldn’t get a pulse ox read because my hands were so cold and clammy. The day ended with me being admitted to the ICU and diagnosed with:
**Primary adrenal insufficiency** and adrenal crisis with severe hyponatremia.
Image source: noracordelia, Getty Images
#30
I was in my mid teens, and I’d started noticing blood in my stool following a surgery. After a few appointments with a doctor who ruled out internal bleeding, haemorrhoids, etc, even coeliac diesease, they were kind of lost, so I was ordered a colonoscopy. To me at the time, it was absolutely mortifying. But obviously, I didn’t really have a choice so I went through with it.
My gastroenterologist went into it thinking I had an IBD, something like Crohn’s or ulcerative colitis. Instead, I had over twenty polyps all throughout. I was diagnosed with a type of polyposis syndrome, which had an average diagnosis age of fifty 😅 So if I hadn’t gotten that colonoscopy, I most likely would have had cancer before I was thirty.
Image source: aureaaurorae, Getty Images
#31
Oh I have a nice one for this. I don’t remember all the details because it happened so long ago so I apologise for any lack of technical terms!
When I was two years old I suddenly started having episodes where I would vomit soon after eating. It would happen frequently enough that my parents took me to the hospital several times for it, but several weeks would pass between episodes. Everyone assumed I was reacting to something I had eaten so they would immediately pump my stomach at the hospital and then run scans and tests. Everything came back normal every time. No one could point to anything wrong with me, it wasn’t an allergic reaction, and there was no pattern to what kind of food was causing it. I was rapidly losing weight and I was extremely dehydrated which is not what you want in a two year old.
It happened again once around my third birthday but instead of pumping my stomach as soon as I arrived at the hospital, they scanned my abdomen. They saw that my stomach was completely tangled up with itself and also discovered that my spleen was in the wrong place. It turns out that my stomach and spleen were missing the bits that anchor them in place. My my stomach was only attached at the two sphincters that connect it to the oesophagus and small intestine, so it would tangle itself up every time it digested something; my spleen was dangling at the end of a single large blood vessel, which is dangerous because it can twist, cutting off circulation and causing the blood stored in the spleen to become sceptic. I was diagnosed with a ‘wondering spleen’ and I cannot for the life of me remember what the official diagnosis was called for my stomach problem.
They solved it by opening me up and ‘gluing’ those two organs to the inside of my abdominal wall by very carefully applying an irritant powder that caused scar tissue to form to specific areas. The surgeries were a gastropexy (which is apparently quite a common surgery for Great Danes to have) and splenopexy. I have a massive scar across my abdomen and a small dent where my feeding tube used to be while I was recovering, so my stomach/ abs are pretty messed up looking. And that’s why I never became a bikini model.
Image source: FreyasFox
#32
Took a year to figure out. It started small. I noticed I was always thirsty and hungry. I drank water nonstop and kept munching on food at work. Then I started to develop what looked like ringworm on my thighs. I used over the counter anti fungal and they would not go away. Saw my doctor who prescribed antibiotic cream and it went away for awhile, but came right back.
I started to look swollen, like I was gaining weight and I was so tired I was nearly falling asleep at work and driving home. Dry skin appeared on my chin and no matter what lotions I tried, multiple times a day, it would be flaky again.
Then my right arm began to hurt for seemingly no reason. Doctor said nothing was wrong. He did comment each time I visited him on my heart rate and blood pressure being up, but thought it was stress.
Then I got a sore throat that wouldnt go away. I saw him again. He felt my throat and said everything felt fine to him and told me he was going to give me an antibiotic I am allergic to. I told him as much and he said he didnt believe I was allergic to it because it is rarily prescribed to children when I had the reaction.
I refused to take it and the pharmacy refused to fill it naturally. I finally went through the hard process of switching my pcp with my insurance. Saw the new doctor and the first words out of her mouth were, “is your neck normally that big?” She felt it and said my thyroid felt large. She sent for an ultrasound and bloodwork. I had a goiter and hyperthyroidism.
My original pcp felt my throat and thought it was fine. This doctor immediately found the problem. .
Image source: Technical-Banana574
#33
Began having memory issues about 6 years ago. Had no recollections of conversations, projects, dates. Started to really affect my job and parent duties. Would forget to pick kids up. Would forget to do specific tasks. People had to as me to do things multiple times at work. Got close to being fired. Told my boss I wasn’t being lazy or disobedient, I couldn’t remember when I got an important email or phone call. Talked to my internist, said diabetics have memory problems, that was it. Asked the four doctors I go to for autoimmune diseases that f any of the meds they put me on could cause this kind of memory issues, all said no. Saw a neurologist associated with Johns Hopkins. Did a battery of tests, nothing. Said I need to eat exercise more and take up a Mediterranean diet. Therapist sent me to a psychiatrist. He had me assessed by a testing psychologist. Said I have untreated treated ADHD. And all the pain and stress from the AutoDiseases was pretty much filling up my brain and stopping me from transferring temp memory to permanent memory. My speed of recall was below 70 on an iq test.
Put me on adderall, and my memory came back within a week.
Image source: StinkApprentice
#34
I had been complaining of daily headaches since I could talk. Headaches that never (and I mean never) went away even with Tylenol, Advil, Ibuprofen, Aleve, etc.
Was told it was tension headaches. Though they didnt have the rubber band around the forehead feeling.
They would get so bad they’d turn into migraines.
At the same time of these headaches, I had bloating, gas, cramps, all outside my non-existent periods (that’s another story).
In 2023, I finally had a doctor run an allergy test including foods and found out I have an allergy to oats.
Guess what I had been ingesting every day of my life?
Oats!
What is the most common first cereal for weaning infants?
Cheerios! Which are made with….
That’s right! Oats!
As soon as I eliminated oats from diet my headache that I had been suffering with for 36 years magically disappeared.
Image source: AtlantisSky
#35
AndI’m late to this thread, but here it goes:
My brain fell into my ear.
I’ll skip to the good part. I already had one ear surgery to replace an ear drum. Got a tube put in, again. It fell out over time. The holes from an ear tube don’t close as adults.
So I have a hole in my ear drum. It’s not really a problem. One day I wake up to find wet stuff on my pillow. I assume an ear infection, toss some drops in, keep moving along.
But it happened again the next day, and again and again. Started happening while I was awake. It was thin and watery, not goopy.
So…I licked it. Don’t judge. It was salty.
Went back to ENT. Immediately sent me for a CT same day. Then an MRI, same day. Not a good sign.
Frequent lifelong ear infections had worn away my temporal bone, I had a hole between my brain and my ear canal. My brain fell 7mm into my ear canal. Then the Dura tore. I had a temporal encephalocele.
I was leaking Cerebral Spinal Fluid out my ear. They got me in for surgery the same week. 1 day in critical care, 2 days in neuro rehab. No brain damage. Ear now has a whole drum and doesn’t get infections.
Image source: OverAllComa
#36
Me, 20F. Was in pain that would only get worse as the years went by… told to lose weight, exercise, eat right, take these vitamins, take a few extra pain pills…. yeah got diagnosed at 28 with ankylosing spondylitis. Now 35 and on meds for the rest of my life, infusions every 6 weeks and even then not always helpjng.
Image source: ohsnapbiscuits
#37
This is multilayered. Neuro tested me for a blood disorder to disprove my history of stroke. It was positive. He said it would NEVER cause me issues. I’ve had at least nine blood clots since then. I likely have had many more that didn’t try to off me.
Then stomach aches and 30% weight loss. I asked my GI if I should call my vascular surgeon. GI told me not to call vascular and to take an antidepressant.
I called vascular anyhow. They looked at the same scan and saw a new blood clot in my mesenteric artery. I had chronic mesenteric ischemia. I had a history of acute MI.
Even the blood disorder is untreatable. I’ve been on blood thinners for years and get blood clots regularly.
A huge deviation from all the doctors who acted like my symptoms were in my head or that there was no cause for concern.
Image source: radarsteddybear4077
#38
Spent 5 days in hospital , abdomen hard as a rock, left w/ no answers. My G.I.’s office called a few days later for me to come in . I was scared because I’ve had 3 colonoscopies in 5 years and an endoscopy. My G.I. Was my ONLY doctor to look at the notes from my stay, the ultrasounds and MRI. She diagnosed me with Signiud diverticulitis and that I had a flare up. Thank you Dr. D.
Image source: No-Buddy873
#39
Had a dull pain originating from my inner pelvis. CT showed a sacral stress fracture. After 6 months it was progressively getting worse. MRI showed a sacral mass. Turned out to be a Chordoma. Occurs only one in one million people.
Image source: Obijuan60
#40
I had something that we thought was mysterious but ended up being incredibly common and, thankfully, easily fixed. I had an undiagnosed ulcer for about 18 months.
It never felt like reflux or stomach pain – it was, at its best, a deep gnawing ache in the center of my core and back. At its worst, it felt like the muscles along my spine were twisting in different directions and I felt so much pressure and ache in my core that it seemed like my ribs needed to snap to relieve it. It wouldn’t relieve it but the only way I could deal with it was to sit against something hard like the metal bed frame along the side of my mattress and just push my back into it as hard as I could. Most of the time I just contort and writhe in pain, looking for some kind of relief that never came. If you’ve ever reached back to unzip a dress or take off a bra, that’s the pose that I felt the need to be in most of the time.
The way the pain presented is part of why it went undiagnosed so long – thought it was muscle related, took ibuprofen, made it worse. I did physical therapy for it, took muscle relaxers and painkillers (prescribed for this pain!). I have a chiari malformation and we thought maybe it was from that, so I went to a neurosurgeon to see what they said. I was READY for brain surgery if that’s what it took to help.
Finally someone realized – oh. She’s losing blood and ridiculously low on iron, perhaps we should do an endoscopy. I ended up needing four pints of blood and an IV bag of protonix, plus a heavy daily dose of Prilosec for six months, but I was good as new once we figured it out. Every once in a rare while I’ll have reflux that triggers the same back pain, and I’m very thankful that I know what it is now.
Image source: tinykitchencoalition
#41
I was 19 and had sudden onset of chest pain and couldn’t breathe properly. Then my left hand and arm would sporadically turn blue, purple, white or red. Tingling. I went to the ED and ruled out everything obvious and told me to go. It kept happening. I was later diagnosed with Thoracic Outlet Syndrome.
Image source: sophielady
#42
A left leg pain, only at night and only while flat on the bed. GP started with usual muscle stuff.
When it didn’t help, asked for a MRI. Found a schwannoma on my spinal cord. Referred to neurosurgeon, removed and pain was gone. Now have to go through MRI every couple of years to ensure it won’t return.
Image source: freitasm
#43
After having my daughter, every time I would breastfeed, I would feel a sudden drop and severe feeling of doom. Almost like a wave… my mom and husband could see it coming by my facial expressions.
I would have it even if I heard a baby crying or if someone brushed up against my chest. It would last about a minute and then I’d be back to normal. It was rough during the early infant stages when I was feeding more often.
Originally diagnosed with postpartum depression/anxiety. They put me on meds but it didn’t do anything at all. If anything the meds made me extra sleepy so I weaned off of them.
My midwife then remembered hearing about this rare disorder called D-MER (dysphoric milk ejection reflex) and contacted me immediately.
It definitely changed things for me. I reached out to an online support group and I found ways to manage. I ended up being able to breastfeed up to 2 years.
SO FORTUNATE to have had this amazing midwife not give up on me.
Image source: Greentea503
#44
Not really mysterious, but that should have been easily been caught early. My MIL has a store throat for over a year. Kept getting gaslit by her Dr that it was a cold or allergies. She wasn’t very educated and very low income so couldn’t/didn’t push harder. My MIL was a very long time smoker and if the Dr had even bothered to actually look in her throat would have seen the very visible tumor. She passed within a few months of the diagnosis of stage 4 lung cancer. She also had various other health issues that were never investigated or diagnosed either.
Image source: Sad_Pie5855
#45
My great aunt started having vertigo and dizzy spells along with flashing lights in her eyes. Every doctor and the ER kept saying migraines and vertigo- then she started having confusion, doctors said she was just anxious about the symptoms and vertigo can leave you confused. They did a brain scan, nothing. Then, 3 months later she passed out during a “vertigo” spell, they took her to the ER and the neurologist refused to run any scans because “nothing would change on an MRI that fast- she got sent home with motion meds. Less than a month later she was rushed in again, this time they did scans- her brain was covered in lesions. They admitted her and told us it was probably encephalitis from a virus, then glioblastoma, then a million other things… finally they opened up her brain and after all of that it was Central Nervous System Vasculitis. Steroids managed it and the lesions went away. She still has memory impacts from the craniotomy and anxiety from the trauma…. But a wild ride!
Image source: karmaismyfiance
#46
I still haven’t found out what mine is yet. I’m chronically sick and it’s worse the more phosphorus is in my diet. I’m okay as long as I keep phosphorus to a minimum and eliminate all phosphate additives. I do not have anything wrong with my kidneys or my parathyroid gland… Perfect labs all around. Just leaving this here in case someone else chimes in with a similar illness and has any answers…
Image source: RyanHeath87
#47
Gallstones. I was 17, the surgeon said “you’re not fat, forty, or an alcoholic so I don’t see why you were referred to me” until I handed him my urine sample that looked straight up like Coca-Cola.
Image source: shrubmud
#48
CVID… endless sinus/ear/pink eye infections. Everything came back a couple of days after finishing antibiotics. Had my immunoglobulin levels checked and I had 0 of any type. I now have to get antibody infusions every month for the rest of my life. Not a huge deal as long as we don’t elect a president who is hell bent on destroying the economy and healthcare systems…. I’ll probably won’t survive until the end of the year.
Image source: OnePipe2812
#49
All of this came on in about five years total – Two bouts of preeclampsia, unexplained infections including staph, 2-3 colds a year lasting two weeks each, annual pneumonia, shaking hands, insomnia, weight gain that didn’t respond to anything, high blood pressure, pre-diabetes. It was Cushing’s syndrome. The tumor on my adrenal gland was found during a CAT scan of my abdomen after an unexplained pelvic infection that went septic. I had surgery a few months later and everything went away pretty much immediately.
Image source: WeaponsGrade520
#50
A parotid tumor. I had this lump in front of my ear and multiple docs said it was a calcified lymph node. Finally I got to a good ENT doctor and he wanted to biopsy it. He immediately called his plastic surgeon friend and they worked on me. That stupid tumor was wrapped around my facial nerve and had spread out “like a lettuce leaf” across the right side of my face. I’m glad they got it all, but I didn’t know if I would end up disfigured. The recovery took a long time.
Image source: Reeeeallly
#51
I was losing weight slowly, but surely over a period of about 1.5 years. I was eating anything/everything and eating FAR more calories than I was burning (like 3000+ per day). I’m an average/small-sized woman. I had tests for everything from gallbladder function to ultrasounds of my abdomen (multiple) to colonoscopy to endoscopy to a zillion blood draws. I saw SEVEN different doctors over a year and a half, plus the one dietician they asked me to see to be “sure” that I didn’t have an eating disorder (that I knew I didn’t have), and I spent at least $8,000+ in co-pays and tests. I was down to 100lbs at 5’6″ and no one would believe me that I wasn’t doing it to myself or something. I could barely stay awake, let alone work. I was on the verge of losing everything.
It was my birth control. Nuvaring. I’d been on it for 9 years at that point, but the change seemed to happen around year 7. Not one doc tested my hormones or suggested that birth control could cause my symptoms. I quit BC, instantly gained all of the weight back, and started running and fitness again and I’m back to a normal, healthy weight for my body.
Image source: writehandedTom
#52
I was having a number of seemingly random physical ailments pop up here and there over the course of the last year and a half or so.
random rashes/unbearable itchiness on random body parts, sporadic muscle and joint pain, grinding my teeth so hard in my sleep that I chipped a tooth, allergy-like reactions to tap water, what seemed like severe ibs, and I’m sure other things I’m forgetting now. all gradually coming and going here and there over a period of ~1.5 years. I had blood tests, stool samples, and an ultrasound. absolutely nothing conclusive.
then this summer I got dumped by my ex. I realized he was toxic and I started trying to mentally heal from everything he put me through. now 4 months out from the breakup, I’m starting to realize just how much my body has relaxed since I’ve been mentally and emotionally detaching from him. all my bizarre random ailments have gone away completely. I didn’t realize the full extent of how much my body reacted to him until I had to break no contact to ask for something back from him a couple weeks ago. when we were in contact, I started having the same physical symptoms again. when we stopped talking again, my body went back to normal. it’s truly bizarre how your body can react to prolonged mental stress.
Image source: aghostofgardener
#53
TLDR: A year of abdominal muscle pain ended up being a big Mesothelioma tumor.
I had a pulled-muscle type feeling on one side of my abdomen, just below my ribcage. It got worse over the course of a few months, so I visited my PCP. She dismissed it as a work injury(farm) and said it would go away. 3 months later, hurting worse, I saw her again. She recommended I go to a chiropractor for pain relief. Chiropractor does xrays but doesn’t mention anything about it. I pointed out to him that I had a ping pong ball size lump near my shoulder blade. He sent me for deep muscle massage, saying it was a muscle knot that needed worked out. The lump didn’t hurt.
I continued for a few months. By now the lump was almost baseball sized and the abdominal pain was excruciating.
I broke down crying from the pain on my way home one day, so I stopped in the ER. I told them I had chest pain, because I knew that would get me all the tests.
ER doc says I had angina and tells me I can go home. As he is telling me this, his phone is blowing up. He answers because it’s an xray tech. Tech says he sees a shadow and needs another xray. Second xray shows a baseball size TUMOR near my shoulder blade.
The abdominal pain was caused by the tumor eating away at the nerves that were connected to my ribs. After it was removed, I have no feeling there at all.
Malignant Pleural Mesothelioma was my final diagnosis. They gave me 18 months to live. That was in 2012.
Image source: idealmelissa
#54
Thoracic outlet syndrome.
And undifferentiated connective tissue disease.
Great times.
Image source: wimwood
#55
Originally was experiencing mouth pain and struggled to chew food.
My normal doctor assumed it was my wisdom teeth, took X-rays, and sent me to a specialist to remove them.
Thankfully the specialist felt the X-rays looked funny, so she took more of her own.
She discovered my jaw bone was growing in size and admitted she only briefly learned about it during medical school. She referred me to one of only doctors in the US that could help.
I’m one of maybe a handful of people in the US with fibrous dysplasia. And as far as I know one of 2 that have it in the facial/jaw bone area
They cut out about half my jaw and years later I’m doing good! It’s cool that I’m now a case study used in medical schools.
Image source: cooldart61
#56
My daughter was called a “medical anomaly” until she was 16.
Turns out she has Fragile X syndrome. She was 16 when the medical field discovered females could have Fragile X. Until then, the belief was it was only in males, so it was never tested.
Image source: ALM777OH
#57
In high school art class I noticed my hands were a bit shaky when I tried to do detail work. That kept up and got worse in college and by grad school I needed to use a wheelchair a lot of the time and was always dropping things. Most doctors thought I was crazy or had some progressive neurodegenerative thing. Then I was in neuroanatomy class and we were taking about central cord injuries and I was like, “That’s it!” I saw a neurosurgeon and turns out I was right. My neck was so unstable the doctor would only let me finish the semester if I promised to wear a hard neck brace 24/7 until I could have surgery. I had my first of many spine surgeries that summer. .
Image source: cha0s_g0blin
#58
I had a terrible headache on one temple and muscular pain in my arms, shoulders, hips, and thighs. I was initially diagnosed with a pinched nerve in my neck. Given a 10 day course of prednisone and the pain went away. The pain came back worse after I tapered off the prednisone and I was very sick. Went to the ER, was released with another course of prednisone although none of my bloodwork was normal.
Switched insurance right after the ER visit. I once again became very sick when the prednisone was gone. Went to another ER where I was given an initial diagnosis of polymyalgia rheumatica. Given prednisone and sent to a rheumatologist. Diagnosed with both PMR and giant cell arteritis. The GCA caused the headache.
The treatment for both was ………prednisone.
But I also get a monthly infusion of another medicine to help control it.
Image source: Caliavocados
#59
I have two I had to find on my own
The first one is that I have face blindness. It means my brain can’t retain the faces of people, so I go by other cues. Usually hair and clothing style and voices. My parents would get mad at me and call me lazy for years, until I was playing the Nintendo ds 999, where face blindness is part of a plot. It instantly clicked! I can’t draw the faces of my parents by memory or anyone I know. A friend of mine once shaved his beard and I did not recognize him.
The second one is emotional imbalance. I have fought depression for YEARS, and it had crippled my life heavily. No mater what meds I took it was never enough. One day an old lady yelled at me for running out of dog poop bags, and I bursted into tears as if I lost my mom. A week later I was in a great mood, and listening to music while on the subway. The song was so good it made me cry of emotion and happyness. I told my psychiatrist I wanted to try emotional regulators because this didn’t sound normal (but it was normal to me). Lo and behold, I’m almost cured of depression. I still have some bad days and side effects of it, but I can now handle my day like a regular human… And get angry! For the first time since I was born I can get angry when I should, instead of crying and falling to a week’s long depression!
Old ladies who are mean get told to suck it now :).
Image source: Herutastic
#60
I had from a teenager had what I thought was super bad dandruff, then it began appearing in other areas that grow hair, then my nails began with severe overgrowth under neath. Then fingers and toes began swelling and bending. Obviously went to doctors while all of this was happening and came away often with either a fungal issue or scabies diagnosis, had none of the above, finally after 7 years had almost lost the ability to walk and my will to live and was referred to see a rhuemtologist reluctantly. The moment I walked into his room I had a diagnosis of the worst case of psoriatic arthritis he had ever seen. It’s quite sad how long it took and I know the gp got a very angry letter from the specialist.
Image source: myrtlesquirtle82
Follow Us
