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

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.

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.

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.".

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.    .

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.

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.

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 :).