46 Times People Thought They Had A Mysterious Medical Issue But Finally Figured It Out

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.

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.

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.

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.

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!!

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.

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

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.

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.

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.

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. .

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.