People Describe Their Medical Self-Diagnoses That Turned Out To Be Right

As a neutodivergent person, it's often difficult to get an accurate medical diagnosis from a doctor. It isn't their fault, though.

My brain is wired differently for sensory perception—something that's been understood about Autism Spectrum Disorder (ASD) for decades. But it took longer—and much more research—to prove that also includes sensations like hunger and pain.

Things that rarely cause neurotypical people pain can be excruciating for people with ASD. Things like specific tastes, smells, sounds, textures, and even lighting.

But things that warn a neurotypical person that there's a problem with their body, might not register at all for people with ASD. Things like pain from broken bones or gall stones or kidney stones.

But after living in my own skin for decades, I've figured out what signals my body does receive and what they mean. And I've been fairly lucky—or persuasive—with medical professionals in receiving the appropriate tests and treatment to cure what ailed me.

A curious individual asked doctors specifically about patients' self-diagnoses, but as often happens on Reddit, more non-doctors than non-doctors answered.

Reddit user Musikcookie asked:

"Doctors of reddit: What was the wildest self-diagnoses a patient was actually right about?"

Imminent Death

"EM/ICU doc here with over 10yrs of experience."

"While it's not quite a diagnosis, experience has taught me to take very seriously when a patient states he's about to die, even if he appears in a stable/controlled condition."

"Patients who have a life-threatening condition usually have a premonition about their imminent decompensation, which is usually preceded by very subtle signs of worsening that may be confounded with pretty much anything that happens on a resuscitation room or on the back of an ambulance."

"I've had patients who appeared to be in a completely stable condition, with acute conditions where cardiac arrest was not foreseeable (example: motorcycle accident with single limb injury), who briefly mentioned they think they are about to die before suddenly entering in cardiac arrest due to a malignant arrhythmia."

"It's believed that patients may perceive a sudden drop of blood pressure and/or the usual release and spike of adrenaline and other catecholamines as 'imminent death', but the reason why this happens is not clear.

"Some we are able to return, others we lose, or 'recover' them to a state where death would be better."

~ shaarlander

Pancreatic Cancer

"I'm a phone triage RN for a family practice. Had an early 60s female that we talked to often call one time in a near panic attack, convinced she had terminal cancer."

"Super nice lady, but high anxiety. Really not in terrible health otherwise. She wasn't even feeling unwell and had the vaguest set of symptoms."

"Scheduled her same day with her PCP who orders a CT of her abdomen to hopefully help alleviate her concerns...."

"Nope. Metastatic pancreatic cancer. She was dead within 6 weeks. I'll never forget taking her initial call and trying to calm her down."

~ Wobbly_Joe

Maternal Instinct

"When I was in labor with my second, after 15 hours of hard labor and 3 hours of pushing (with epidural—I’d been having contractions every 6 minutes for 4 weeks around the clock, but nothing was progressing) I remember looking at my husband and saying, 'I know why women die in childbirth' right before I passed out.

"I woke up in the OR as they were doing my c-section. My doctor was on the way to the hospital and they had called her to tell her what I said and what happened."

"She said she screamed at them to get me into surgery ASAP because it was an absolute emergency. Apparently I was right."

"My body was going into shock and shutting down. Had they waited the 15 minutes for her to get to the hospital, neither my kid nor I would have made it."

"Instead, he’s turning 11 next week and has a 9-year-old little brother."

~ Gloomy_Carrot_7196

Fractured Femur

"I ran cross country in college. My senior year my thigh ached. I told everyone something was wrong with my bone while being told it was a muscle issue."

"After being treated for every muscle issue in the book, I demanded an x-ray. I had a stress fracture more than halfway through my femur."

~ Lampy-Boi

Colon Cancer

"Had a patient who came into the ED with vague mild abdominal pain whose friend recently died of colon cancer. She was convinced she must have it too."

"Told her cancer wasn't contagious like that, but ordered a CT scan because she was so insistent in order to reassure her. Low and behold, she had a huge colon mass. Very unusual case."

~ harrycrewe

Leukemia

"I knew my partner had leukemia about a week before I could convince him to go to the doctor. He was bleeding and bruising really easily and had petechiae. I wanted to go to urgent care where I knew the CBC was done quickly onsite, but he instead wanted to wait to go to his primary."

"I took him to his primary and had a bag packed for the hospital in the trunk. The doctor told him it was likely a B-12 deficiency, but that he'd do bloodwork to put my mind at ease anyway."

"I asked if the CBC was done onsite or not, and he said it was sent out. I asked if he planned to rush the CBC."

"He got very angry and said, 'there is nothing the CBC could show that would change my treatment plan'. Then he told my partner he needed to stop me from Googling."

"We got a call that night from the lab that his WBCs were dangerously high and platelets were dangerously low and I had to immediately take him to the ER. I did, and he was diagnosed with acute leukemia."

~ Psmpo

Listen

"This is why I usually ask patients what they think is going on or if there is anything they’re specifically worried about."

"Either I get a good idea, or I can figure out a way to make them feel better about their concern."

~ feather421

Erythropoietic Porphyria

"One of my dearest friends from middle school was suffering from absolutely devastating medical issues. She went from bright and thriving in university to having to drop out before she graduated because her health bottomed out. She lost her job that paid her a fantastic amount... basically her entire life fell apart."

"She was telling me about the new weird thing happening with her: some strange anemia that was found to be the result of abnormally low ferritin in her blood, which is what enables your red blood cells to carry iron."

"That was when something clicked in my brain: horrible digestive issues, peculiar anemia, chronic infections in her spleen that required a splenectomy, would sunburn to a blistering point in less than a half-hour, a diagnosed 'allergy' to sulfa drugs, horrible reactions to carbamazepine, retinol gave her a suppurating skin rash."

"I'm a pre-med dropout and one of the first classes I took on my path to pre-med was an undergrad course in rare conditions and diseases. And one of the ones we discussed in our inherited disorders segment of class was porphyria."

"There's an easy way to tell if someone has porphyria: have them pee into a clear plastic or glass cup and expose it to direct sunlight. In a period of hours to days, the urine of people with porphyria will turn from clear or yellow to a wine red or wine purple."

"So I asked her if she trusted me enough to do something weird, told her to get a clear plastic disposable cup from her kitchen, pee in it, and put it in her windowsill where nobody could see it. And if anything about it changed, come tell me."

"Approximately four hours later, she called me on the phone screaming that her 'piss turned f*cking purple-red like a goddamn vampire' and I told her she needed to go to the doctor and get tested for porphyria."

"2 weeks later she tagged me on Facebook calling me the 'Lesbian Doctor House' because she was diagnosed with congenital erythropoietic porphyria!"

"She’s doing as 'better' as she can. It's a recessive genetic disease so, barring some exciting news related to CRISPR, there's no way to cure her. She's on several medications to help manage her symptoms, there's special lightbulbs all over her house that don't produce UV radiation, and she basically has to live nocturnally now."

"HOWEVER, I want to state that all of that is much better than where she was before! She is much healthier, feels much better, and the adjustments weren't too hard when she was literally dying before."

~ Ranger_Chowdown

Polyp

"I’m a nurse, but just had a patient who came in for a colonoscopy due to constipation and pain with bowel movements. He told me prior to the test he felt like there was something 'catching' on the left side of his abdomen when he pooped and was like 'maybe I have a big polyp there or something'."

"Sure enough, he ended up having a 2.5 cm polyp that we removed from that exact area. I’ll never get to find out if that catching sensation ever went away for him, but I thought it was interesting that he was right."

~ madicoolcat

Poisoning

"I work as a medical lab tech. We had a patient who came in insisting that her neighbor was poisoning her. Everyone dismissed her assuming she has some kind of paranoid psychosis."

"She remained in the ER on a psych eval. I ran all the standard labs on her and they were normal but this patient would not budge. She was admitted to psych on a hold."

"At this point, one of the hospitalist decided ‘why not’ and ordered labs to test for several heavy metals (mercury, arsenic, cadmium, lead, thallium) and ethylene glycol (antifreeze). Her ethylene glycol level was 32. THIRTY TWO."

"The appropriate level is zero, so that's significant."

"I don't know if she was legit being poisoned by her neighbor or if it was self induced, but damn, that patient taught me a very important lesson that day."

~ Wrong_Character2279

"The lesson being that if a patient tells you they're being poisoned, you should probably check for the most common poisons?"

~ ElectroNetty

Fungal Infection

"I’m a patient. I had a super painful skin infection on my face and neck that my dermatologist insisted was just an eczema flare up. She prescribed topical steroids."

"They help in the short term, but I continued having painful rashes on my face. I asked if it could be a fungal rash, but the derm said she was sure it was eczema. Unfortunately, steroids weaken your immune system, thin your skin, and facilitate spreading of any infection."

"A few months later, my hands and fingernails get really painful. Life was hard because I was in pain when I tried to do normal things like write, type, open things, etc... Eventually, I started getting bleeding blisters on my hands and my actual nails turned yellow."

"I see the dermatologist because at this point I realize topical antifungals give me some relief, but I’d need oral antifungals to treat the actual nails. The dermatologist swore this was eczema dishydrosis."

"I asked for a culture to be taken, and she took a swab (NOT A NAIL CLIPPING which is needed to diagnose fungal infections of the nails). So the diagnostic test of course came back negative. She prescribed steroids again, but I was hesitant to use them because at this point, I did not trust my dermatologist one bit."

"I see my PCP and tell him what’s up. He agrees to try oral terbinafine, and worked. My nails fell out and grew back in, and the infection cleared up. The rashes on my face cleared up, too."

"I was on the antifungal for 7 months. I had a follow-up with the dermatologist and showed her how the antifungals actually worked and to show her SHE WAS WRONG."

~ Oatmeal_Captain0o0

Hypoglycemia

"Patient here. Told my family GP (who I’d seen since I was a kid, and who worked with and saw both my parents as patients for years) that I thought I had reactive hypoglycemia."

"He scoffed. 'You don’t have that. Why would you think you have that?'."

"I told him my symptoms. He was doubtful, but told the nurse to get me a Coke and made me chug it. Sent me to roam around the hospital for a little bit, then get bloodwork and come back."

"I came back, and his first words were, 'This is so aggravating'."

"'Does…that mean I have it?'."

"'YES, THAT MEANS YOU HAVE IT'."

~ chekhovsdickpic

Skin Cancer

"Not a doctor, but my aunt and uncle had a Border Collie that would bury his nose in my uncle's back when he was sitting on the couch or recliner. He would walk up, sniff and keep sniffing until my uncle would shoo him away. A bit later he would come back sniff again and just stare at my uncle."

"A few weeks later, my aunt was watching one of the local news channels and they featured a dog that could smell Parkinson's and she jokingly told my uncle about it. He mentioned their dog constantly sniffing one spot and one spot only on his back."

"So he went to a high school friend who was a doctor in dermatology. He said it didn't look right and did a biopsy on it."

"Sure enough, he had skin cancer, but they caught it early and all he ended up with was a scar on his back."

~ AnatidaephobiaAnon

Seizures

"Woman in her 40s came in and told me she was having seizures."

"I asked how she knew and she said her right hand would periodically stiffen. There was no loss of consciousness or other symptoms more associated with classic seizures, but I ordered tests anyway."

"Turns out she had been having multiple focal seizures."

~ darcydidwhat

Pertussis

"Not a doctor, but in junior high I had a little cough that just wouldn’t go away. My grandmother was CONVINCED it was whooping cough [pertusdis]."

"I felt totally fine—it was just an annoying cough. She made me go to the doctor and told the doctor that she thought I had whooping cough. The doctor informed her that it hadn’t been in our area in over 10 years so she doubted that was the case."

"My grandma forced her to test me for it anyway."

"Turned out I was positive and considered patient 0. The whole school basically ended up getting it, and we had to shut down for 2 weeks until it went away."

~ Emergency-Economy654

Have you ever been right about a self-diagnosis?