Health issues are basically never pleasant, since many symptoms are shared and it can be pretty hard to understand (or obtain!) solid test results without the help of a doctor. This is, after all, why most people just see medical professionals whenever they feel something is off.
Someone asked “Doctors, what were the wildest self-diagnoses a patient was actually right about?” and people shared their examples. Just remember, it’s still always best to see a doctor first. So get comfortable as you scroll through, upvote your favorites and be sure to share your own experiences below.
#1
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.
Image credits: AnatidaephobiaAnon
#2
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.
Image credits: Psmpo
#3
I'm not a doctor, but this is what happened when my son self-diagnosed correctly.
Three years ago he developed a terrible earache and went to urgent care, where they told him he had an ear infection and gave him an antibiotic.
The pain intensified over the next day or so, so he returned and was told he should make an appointment with an ENT, but because it was the weekend, no ENT offices were open, so he had to wait until Monday.
In the meantime, his ear started draining and he saw what looked like spores in the fluid, which would indicate a fungal infection. (He's a naturalist and knows what spores look like.)
The pain grew so intense that he ended up going to the ER. He told the doctor who examined him that he had seen spores in the drainage from his ear and suspected that he had a fungal infection. He later heard the doctor talking to a nurse in the hallway, laughing and saying, "He thinks he saw *spores.*" The doctor prescribed another antibiotic and a steroid.
The next day he flew home to see us for Thanksgiving. I don't know how he managed the flight, because as soon as he got here, he curled up on the floor, howling in pain. I immediately called ENT offices all over town, but most were closed for Thanksgiving week or said they could not see him. Finally one scheduler took pity on him and said she would move things around to get him in.
A PA examined him and confirmed that it was a fungal infection. She told him that the steroid he had been prescribed by the ER doctor was the same agent used in the laboratory to *culture* fungal infections. His infection had started to enter the eardrum and from there could have spread to his brain and killed him. She gave him a prescription that cleared up the infection very quickly.
The wrong diagnoses at urgent care and the ER cost him over $1,500 out of pocket and several days of excruciating pain. The ENT's office did not take his insurance but charged him only $250 for the correct diagnosis.
Image credits: BSB8728
#4
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. I felt totally fine it was just an annoying cough. She made me go or 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.
Image credits: Emergency-Economy654
#5
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.”.
Image credits: chekhovsdickpic
#6
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 d***s, horrible reactions to carbamazepine, retinol gave her a suppurating skin rash.
I'm a premed dropout and one of the first classes I took on my path to premed 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 "p**s turned f*****g 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 "Lesbian Doctor House" because she was diagnosed with congenital erythropoietic porphyria!
EDIT: For everyone saying I "stole" this from "Scrubs" - I didn't even know "Scrubs" had a porphyria episode so I looked it up and it came out a full year *after* this happened :) Also watching "Scrubs" and giving someone a Dx doesn't cost you $100,000 that you end up having to pay back for 20 years ?.
Image credits: Ranger_Chowdown
#7
Patient here, half way though my cancer treatment tell them it's back.
No one but mom listened to me.
After two months of non stop telling them they did a scan.
Turns out yes I had cancer again and look it was getting close to being terminal.
The student doctor learned to listen that day.
Image credits: vicki_cass
#8
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.
Image credits: shaarlander
#9
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 and ethylene glycol. Her ethylene glycol level was 32. THIRTY TWO.
Idk 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.
Image credits: Wrong_Character2279
#10
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. ETA: 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 it f*****g 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.
Image credits: Oatmeal_Captain0o0
#11
Not a doctor, and I don’t play one on TV but nearly became a doctor half a lifetime ago.
I diagnosed my husband’s brain tumor, leading to emergency surgery.
A month in and out of the ER - personality change, couldn’t stay awake, diagnosed with a “B12 deficiency”, “dehydration”, frequent vomiting, vision looked “weird” but he could never explain it (turns out his peripheral vision was gone), and a “swollen optic nerve - probably just high BP” from ophthalmology. After a weekend where I could barely wake him up, he went back to the ER where he waited four hours in the waiting room. I asked him if anyone had done a CT or MRI of his brain, just throwing c**p at the wall to see if anything stuck, and I assumed they had - they had not. Told him to insist on a CT, because I had a wild sneaking suspicion.
Two hours after being called back he was in an ambulance on his way to a different hospital with a neuro ICU to get scheduled for emergency brain surgery. Massive tumor with dangerous obstructive hydrocephalus.
Image credits: HyperIndependent
#12
Patient here.
I had a work accident. Opened the roll up door on my delivery truck and the load of tires fell hitting my shoulder and neck.
Couple days later I started having fainting spells and my arm became swollen and discolored. Lots of neck and shoulder pain.
Lots of doctors. Lots of tests. Lots of specialists. No diagnosis.
I came up with the solution. I tore the anterior scalene muscle. As it healed it compressed the subclavian artery and nerve that go to the arm.
Key to this explaining the swollen arm was a quirk of anatomy. The artery was compressed between where the carotid and veterbral arteries branched off. The carotid fed my brain but normal flow to the vertebral was cut off.
So my body did a weird thing. It reversed the blood flow pulling blood out of the Circle of Willis, a loop of blood vessels in the brain. That was the only blood feeding my arm for several months.
A doppler ultrasound confirmed Thoracic Outlet Syndrome with a Subclavian Steal retrograde blood flow in the vertebral artery.
Image credits: que_he_hecho
#13
Patient here. I was right about having a pituitary microadenoma causing Cushing’s disease. I asked multiple doctors to help me with various symptoms, including a neurologist, and it was missed for years. Finally a wonderful endocrinologist agreed to test my cortisol and it was sky high. 18 months out of surgery and I’ve lost 110 lbs, no longer diabetic, blood pressure is great, no more kidney stones (I had 8), hair has grown back, glaucoma is gone, etc. Most doctors just wanted to diagnose obesity instead of seeing it as a symptom of something else.
#14
When I was pregnant, I was hospitalized overnight due to one of my routine labs being abnormal. Along with high blood pressure, my liver enzymes were extremely high but everything else came back normal. I spent the night googling my labs and symptoms and asked my nurse if it could be HELLP Syndrome, which is a very rare form of preeclampsia that can cause your liver to bleed and can kill both you and your baby if let go for too long. The only cure/treatment is to deliver. She literally laughed at me and said there was no way I had it, because I would’ve been in more pain.
2 weeks later I had an emergency induction due to HELLP Syndrome. Thankfully we are both okay, but I will never get over her being so flippant about something that easily could’ve killed us.
#15
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 bizarre case.
Image credits: harrycrewe
#16
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.
Image credits: darcydidwhat
#17
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.
Image credits: madicoolcat
#18
Not a doctor, but a patient.
I got mono at 16. It didn’t leave. I was getting recurrences twice a year where my lymph nodes would swell and I would get sick just like the first time, my blood tests showing glaring red positives for mono markers.
I got my tonsils out in my 20’s and the mono seemed to subside.
Two years later I got all the same symptoms. Swollen lymph nodes, fatigue, all the rest. I went to the urgent care. The PA took one look at the bumps under my arms and prescribed me antibiotic cream for ingrown hair. I told him about the mono - he rolled his eyes and told me they were infected ingrown hairs. I insisted on a blood test, even if I had to pay out of pocket.
Blood tests came back and not only was I positive for mono, the markers were 19 TIMES the normal numbers for a positive case.
This thread made me remember that story. Haven’t thought about it in a while.
Image credits: creepy-cats
#19
A cousin from Sweden went on a trip through Africa. His aunt (my MIL) is a doctor in South Africa. She told him to call her if he has any symptoms when he goes back home because she knows that European doctors struggle with tropical diseases.
He goes home, gets sick, calls her, she diagnoses bilharzia and tells him to repeat the treatment after two weeks - the standard single course schedule never worked for her patients. So off he goes to these Swedish doctors who have never seen bilharzia and they don’t really believe him but since he was recently traveling they decided to test after all. It’s bilharzia.
And of course - they wouldn’t repeat the treatment because their books specify a single course of medication. And of course- it returns. Eventually they prescribe two courses, as my MIL said in the beginning. He was fine after that.
#20
Patient here.
My story is just... A long and dumb story.
I kept getting migraines more and more often. I started getting nose bleeds and blacking out at the gym. Then one day after the gym the migraine never stopped, so I went to my doctor, who gave me a Toradol shot. That didn't work, so he sent me to the ER.
ER: Its sinusitis go buy a humidifier (I did)
The migraine didn't go away, and I could hear my heartbeat too, so I made an appointment with an ENT. They ordered an MRI - and when they saw the results told me to see a neuro ASAP. They couldn't help me see one, couldn't write a referral or anything. But I needed one as soon as humanly possible.
So I called my GP. They sent referrals to every neuro in my area. I called 13 offices, made 13 appointments, and got put on 13 wait lists. I saw a neuro 2 days later. (then called the other 12 back to cancel).
Neuro was like, the MRI shows signs you might have too much cerebral spinal fluid in your brain, but MRIs don't actually see csf, so all we can see is the side effects, thinning of the bone from the pressure wearing away at it. Your pituitary gland is flattened, etc. We need to do an MRV and lumbar puncture to see what's actually happening with the cerebral spinal fluid.
So we do that, and the pressure in my head is 40 when it should be 5-15. Cool.
She puts me on meds to lower my csf production. OK.
The pain does not change. She doesn't know why.
So, this neuro, because I was just trying to see ANY NEURO was a sleep specialist. I decided to change to a headache specialist for more specialized care.
He changes the types of meds I'm on, but the pain basically is still agony.
I ask him 'hey, so, I read birth control can trigger this. Should I take my IUD out?'
He's like 'no. You should leave it in. It's stabilizing your hormones so your periods don't make things worse.'
I listen to him for a few months, then say f**k it and have it removed. The pain dropped significantly within three days of removal.
Then I'm like, wtf. My ability to think clearly is not great, but I pull up my MRI and MRV reports and start reading them and doing research on what it all means.
Transverse sinus stenosis. A cerebral spinal fluid vein was collapsed inside my head.
So I went to my neuro and was like 'hey, isn't this important? Shouldn't we have to fix this?'
Neuro: no. Ignore that.
So then I went to see a neuro ophthalmologist.
He was like : your eyes are fine so your brain is fine. What your feeling is migraine. The meds are working. Go back to neuro.
I was like, wtf.
So I went to a DIFFERENT neuro.
Me: 'I want a stent.'
Neuro :??? (looks up things on computer) oh. You do have a stenosis. I'm not really a vein doctor. You need a stroke specialist. Let me refer you.
Stroke specialist: MRVs suck at showing you how bad a stenosis is. You need a neurosurgeon to go in there and take a look at it.
Neurosurgeon : yeah. Let's go take a look.
So, the neurosurgeon did an angiogram (exploratory surgery) and saw that the pressure in my head was STILL 40 after two years on the highest dosage of pressure lowering medication, and I qualified for a stent to fix the vein.
I was right. The pile of my previous doctors were wrong. I had to keep changing doctors and believe that the vein was the issues, and all my doctors were idiots until I finally got help.
There's more dumb stuff that happened over last 5 years, but that's the major stuff.
#21
Me: Dr I have a Kidney stone
DR: no blood in urine, can't see anything on ultrasound
3 days later
Me: My stone is causing me pain and cold sweating
DR: Let's talk about an x-ray of your spine
DR: There is a slight misalignment. Could be trapped nurve, Referred to Spinal surgeon.
2 days later
Me: taking a p**s, wtf was that
Me: Dr, here is the 4mm stone.
Image credits: orbit99za
#22
Patient here. I’ve always known I have “something” wrong with my heart. I was never taken seriously as a child and a teen by anyone and the PCPs I saw never did anything more than listen to it for a few seconds and tell me I was fine. I just learned what I could and couldn’t do in my daily life to keep it from interfering and over time sort of left it at the back of my mind.
After a series of unrelated medical events over the course of a couple of years, I was aware of my heart getting worse. After much pressure and persistence I got a referral to a cardiologist who told me to track my vitals on my Apple Watch for a few months and come back to him with the results, as he was off on leave until then. I was a bit bummed. It had taken a lot to get a referral to him and I was still being brushed off. Then COVID hit and everything pretty much shut down in my country for 2 years.
During that time the only notable event was being hospitalised for kidney issues after severe gastro that left me so dehydrated I was hallucinating. Just before discharge I had a doc come around to do final obs before releasing me. It was a teaching hospital, and he had a gaggle of students with him. He listened to my heart and got excited and then proceeded to use me to teach said students what an S3 heartbeat sounds like, and how to find it. None of his talk was directed to me, but I listened and I learned.
I got myself the best portable ECG Holtier type monitor I could afford and I wore it to take ambulatory EGCs… And then I learned to interpret them. Obviously not to a medical standard, but enough to be able to note the areas of concern, what abnormalities in the waves I’d noted, my bp and what I’d been doing at the time, physical symptoms, etc.
Then I went back to my cardiologist and told him I had WPW Syndrome, and it was getting worse, and he needed to do something before it killed me. He scoffed at me, but I’d been expecting that and handed him pages and pages of relevant ECG recordings and asked him to at least prove me wrong. He looked over the ECGs and my notes, told me he knew medical students who weren’t capable of this (which scares me tbh!), ordered his own tests targeted on the info I’d gathered, and not too much later begrudgingly confirmed my diagnosis of WPW. One catheter ablation later, my life is much improved.
Stupidest thing is, if I’d been taken seriously at any point prior it could have been managed with medication, and not done permanent, irreversible damage to my heart. I shouldn’t have ever had to learn to read ECGs, nor spend hours on medical sites reading medical journals researching heart conditions. I’m still convinced I’m going to die of a heart attack, but at least it won’t be today, or hopefully tomorrow.
#23
Patient here. Was thru hiking the Appalachian Trail and was in southern Virginia, near Roanoke. Was having a fine day until I went to pee in my motel room - straight blood. Also had been getting weird spots and sores on my legs that didn’t go above my waist or below my ankles. ER doctors (3 of them) all stated it was a tick borne illness, considering I had been hiking for a month in the woods. Rocky Mountain spotted fever probably. But I had that in college and knew it wasn’t it. I told the fourth ER doctor who came in that based on my googling I had Hennoch Schonlen Purpura, an auto immune disorder that is very rare in adults. She agreed, sent me to Virginia Tech for a biopsy and they confirmed vasculitis. Went on to get arthritic pain in my knees and severe abdominal pains. Went for an ultrasound and discovered I had underlying Autosomal Dominant Polycystic Kidney disease - that after testing, I did not inherit from my parents. Doctors began talking to me like I should be in a textbook. 7 years later I am symptom free and just taking a small dose of blood pressure meds but felt like I was on House for a few months there .
Image credits: Par3Hikes
#24
Patient, but I ran cross country in college. My senior year my thigh aches. 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.
Image credits: Lampy-Boi
#25
Patient.
Found a lump in my neck. Saw doctor #1. She said allergies. Sent me home with antibiotics.
Found second lump in neck. Saw doctor #2. Allergies. Don’t stress. All bloodwork is fine. Different antibiotics.
Antibiotics didn’t help. Saw doctor #3. He was a little more suspicious but because I was a young 19yo he said I was fine and to try a different antibiotic.
Went onto WebMD that night…. Few days later saw doctor #4. Said I know this is cancer. Please do more tests.
Sure as s**t. Stage 3 papillary and follicular thyroid cancer. Had major neck surgery 3 weeks later where they removed my thyroid, 2 parathyroids and 24 cancerous lymph nodes from my neck and chest. Have a 9 inch scar up to my ear.
14 years cancer free since October 6th.
#26
Had a patient come into the ED, and told me he had epiglottitis (an uncommon infection of the epiglottis, part of your throat) when I went to see him. I asked how he knew - he’d had it before but was also a 90 year old retired ED doctor. He was right.
Image credits: talashrrg
#27
Patient here (I know, I know, I'm sorry). I had been having various digestive troubles for a few weeks, but thought I was just recovering from food poisoning or at worst maybe developing something like IBS/IBD. One night while I was lying in bed with my hands on my stomach, I felt a lump. Instantly nervous, I started pacing around my house, googling symptoms. Of course webMD and various articles kept suggesting cancer, but of course it's never cancer.
Well... It was cancer. Stage IVB ovarian to be exact. Whoops.
#28
Not a doctor, but i (correctly) told my doctor that I had dengue fever. I had just returned from Puerto Rico, and had all of the symptoms, except for bleeding. The Dr dismissed my suggestion and told me that i had the flu. After a few days, he relented and had me get a blood test. And it was dengue fever!
#29
My husband was bitten by a spider. We live in Australia so I knew the signs to watch for. He showed none of them but I wasn’t happy about a couple of comments he made (“I don’t like this funny metallic taste in my mouth”, “I don’t feel too good”) so I took him to the ER despite everyone saying he would be fine and that I was over reacting - I shouldn’t burden an already strained system. We got there and I went to the desk and told them that something was wrong, my husband had been bitten by a spider and … right then he collapsed. He wouldn’t have survived if I didn’t listen to my gut and hadn’t taken him, because a 5 minute delay waiting for the ambulance would have meant it was too late. .
#30
Not a doctor (apologies), but I diagnosed my husband with gall stones when his doctor, urgent care doctors, and his mother wouldn’t listen to me. The doctors thought he just had a stomach bug and his mother was convinced he had heart issues because he was experiencing chest pain. I was the only one who noticed his eyes had started turning yellow and that the chest pain wasn’t in the right area for a heart attack. The last time he went to the ER I told him to ask about gall stones, sure enough that’s what it was and they had caused so much damage he had to have his gall bladder removed. His gall bladder ended up being 0.6” inches thick when it got removed. The surgeon said it was the worst gall bladder he had ever seen and I’m pretty sure he kept it to show to his students/interns.
#31
My mother knew she had endometriosis. No one believed her because she was young. When they finally cut her open, it was widespread and pulling at her organ walls. She had to have several surgeries over the next decade. Thanks to experimental treatments, on less than half a reproductive system, she popped out a handful of kids.
#32
Another patient but work in healthcare. I had pain in my right leg, specifically my glute. Progressed to lightning like pain down my leg, pins and needles. I assumed I had fluid or a mass crushing my sciatic nerve, and after a week of rapidly increasing pain assumed it was an abscess.
So I started feeling septic. Went to ER they refused me, sent me up to the primary ward. They immediately sent me back down to ER and ordered a CT- lo and behold I had 500mL abscess under my muscle crushing my nerves in my right leg.
Before my second surgery, my specialist refused to believe they drained that much from me, and I had to show photos as proof. He said and I quote “If there had been that much you’d be in the guinness book of world records”. He called in other doctors and nurses to review my photos and case afterwards. ?.
#33
(Not a doctor) My friend diagnosed herself with HIV. She had swelling around her neck and the doctors weren't finding anything. She googles her symptoms, calls me, says she thinks she is HIV positive. I spend the call trying to calm her down and telling her to get tested, but that probably isn't it. Her doctor also told her, there's no way, but she insisted on getting tested. Yep, she was right.
#34
Not a doctor but a patient. I have UTIs that are asymptomatic until I have blood in the urine. Was probably on my third or fourth one at this point so went to urgent care. The doctor was convinced I was on my period (I’m on seasonal birth control). Even asked how I knew I wasn’t. Luckily the test showed a UTI. Gave me Cipro. I was back in two days later because I was having heart palpitations, anxiety, and a fast heart rate. I was having a reaction to the Cipro and asked to be put on another antibiotic. Doctor thought I was crazy but agreed to let me switch. Issues went away the next day. When I got a PCP finally, she said it was a definite reaction to Cipro and while not an allergic reaction per se, to list it as such to make sure I don’t get put on it again. She was mad the doc dismissed for both the UTI and Cipro issues.
#35
Me: hey doc I think my foot is broken.
Doc: it doesn’t look broken, not bruised at all but we can get an xray to check.
After xray doc: wow you broke your fifth metatarsal right in half.
My foot wasn’t swollen nor was it bruised. I had been running 10 feet from my best friends back door to my car. There was a dip in the grass and while I didn’t fall, it felt like I rolled the middle of my foot. So yeah I broke my foot running 10 feet and it didn’t even look like I did.
Edit: went to the doctor 3 days later when I still couldn’t walk on it.
#36
Not a doctor. I spent a week in hospital last year with a bleeding duodenal ulcer. No pain, but blood coming out both ends, very unpleasant. After they patched me up and sent me home, I began complaining of appendix pain. Due to the close correlation in time between the ulcer and the lower abdominal pain, I went to multiple doctors saying that I thought the two were linked. It took nearly 18 months to figure it all out. Gastric surgeon removed my appendix and caecum. Testing showed I had a persistent Yersinia infection that had screwed up my lower abdomen. How did I get it? I had multiple transfusions while in hospital the year before. One of the units of blood was contaminated with Yersinia, a bacteria that survives the chilling process. I started reacting to the blood as soon as they started me on it, so I only got a small amount of it. But because I was still bleeding into my intestines, the bacteria went straight to my gut, infecting me.
#37
Not the patient himself but his mom. This child was 18 months old and was admitted due to constipation. We were giving him medicines for that and it was getting better but the mom started to insist to get an MRI of his brain. We refused at first because we did not think there was any need for it and thought it was a waste of resources. Eventually we gave in and turns out that he had a massive brain tumor (medulloblastoma)….
#38
When I was in high school I had a spell of terrible nausea. I couldn’t stop vomiting for hours. My parents took me to the emergency room where all the nurses and doctors thought I had the flu. They tried to send me home but my mother insisted that they do a cat scan to rule out appendicitis. She was right! None of my symptoms matched what they typically see but my mom just KNEW. Emergency surgery a few hours later.
#39
Patient here. I have always had a lot of random, seemingly-unrelated health problems - issues that no normal person would generally link together. A new one cropped up a couple of years ago so I started doing research on it. I read about a very rare (estimated ~1:60,000 people) genetic condition whose signs and symptoms matched many issues I’d had even since childhood. Made an appointment with a genetic counselor who specializes in it thinking they’d tell me I was crazy. Instead they confirmed I have it, albeit a thankfully mild case. It’s so rare that most of my other doctors haven’t even heard of it. No one in my family has it either so it just randomly showed up in me.
#40
It happened to me as a patient 4 times.
On the first occasion, I was 15 and started having bouts of severe abdominal pain and developed irregular periods. My mum took me to the GP so many times, and they just kept blowing it off as anxiety or just my period. Got a half assed diagnosis of 'it could be endometriosis. Track your periods for 3 months and come back.' I kept going to school, etc, because I had no choice but kept gradually getting sicker. Went to comic con with friends and projectile vomited on the con floor. That was embarrassing af. Was in intense pain the whole weekend, and when I got home, I went straight to bed. Woke up at 3am in so much pain I could barely move. Woke my mum up and told her I thought I was dying. Got rushed to hospital by ambulance, and the first doc we saw said it was constipation. Mum went nuts and demanded a second opinion, and I was admitted for observation. 4pm the new doctor finally sees me and sends me for an immediate scan because I'd gone grey and was barely responsive. The scan showed a massive growth on my ovary and an ovarian torsion, and I was taken to the theatre immediately. On the way to theatre, I genuinely thought that was it, and I was about to die. I did stop breathing on the table, but obviously, I did survive it. Mostly thanks to my mum digging in her heels and fighting for me. She told me at the time she had a gut feeling that if I was sent home, I would have died, and she was right, as by the time I made it to theatre, I was already going septic. Mums just know.
Second time, I was at uni and had the most blinding pain in my kidneys. It was so bad I collapsed in my uni house kitchen, and my housemates had to call an ambulance. It felt like someone was tearing my sides apart, and it was all I could do not to scream continuously. I got given morphine and gas and air in A&E, and my urine test was positive for blood. Was eventually seen by a doctor, and I told him I thought it might have been a kidney stone as those run in my family. He laughed and said, 'You're only 22. You're way too young for that it's probably a uti, but we'll do a CT to rule it out.' I got the scan, and a few hours later, the same doctor returned and sheepishly told me it was indeed a kidney stone. I was sent home with hefty painkillers and pissed it out two days later.
Third one again while at uni. Started feeling unwell during a lecture. By the end of the lecture, I was pale, clammy, and was struggling to stand upright. I had searing pain in my lower right abdomen and just knew it was my appendix. I went to A&E and had blood tests etc. They came back normal, and I was told its Gastroenteritis and was sent home. Didn't sleep all night and went to my GP the next day. She sent me to the hospital because she didn't like my symptoms. They did blood tests again, and they were still normal, but I felt and looked like s**t. I asked them if it could be appendicitis and was told no because 'if it was your labs wouldn't be normal.' They discharged me again. Seven hours later, I woke up and started puking and couldn't stop. Again, my housemates called an ambulance. This time, the surgeon actually bothered to feel my abdomen as no one had done that, and when he pushed on the painful area and let go, I almost flew off the bed and screamed. He said it might be appendicitis, but it was unlikely, but because of that reaction, he was going to do a laperoscopy and see. Dear reader, it was appendicitis, and the thing burst as they were removing it. A serious complaint went in to the hospital after that.
The fourth one happened recently. I've had ongoing upper abdominal pain, reflux, and heartburn since February, and it's been slowly getting worse. I've had multiple appointments with the GP, who has been very dismissive, just referring me to specialists and prescribing painkillers. I have EDS and we are prone to weird s**t going on with our organs, so after having a few basic scans that didn't show anything, I asked if it could be a hiatus hernia as I have all the signs including weight loss, lack of appetite, nausea, and difficulties swallowing food. He all but rolled his eyes and said it's unlikely because of my age but sent me for an endoscopy anyway. I have a hiatus hernia. Not just that but a particularly rare type where the stomach is actually herniating up into the oesophagus. So now I'm waiting to find out what they're going to do about it. All of these occasions I've voiced that I just had a gut feeling about it, but I'm always scoffed at or not listened to and then never apologised to when it turns out I'm right. Some doctors let their egos get in the way and could absolutely do with more lessons on actually listening to the patient and not blindly going by the textbook. I'm convinced that when I do eventually kick the bucket, it will be because a doctor didn't take me seriously.
#41
When I was in second grade, I was obsessed with Harriet Tubman. Like I would read every book and watch every YouTube video I could find. It just so happened that quite a few of those books and videos described in detail what having epilepsy felt like. I would then wonder if I had epilepsy, since I had quite a few of those symptoms, but thought that was too much of a coincidence. I then got diagnosed with epilepsy after those symptoms became unbearable. I still remember there was this one graphic novel that described the seizure aura that happens before a seizure and the post-dictal state afterwards extremely accurately.
#42
I knew I had something wrong with my spine weeks before I was diagnosed with a spinal epidural abscess.
I kept telling the doctors something was wrong and was told "I've been doing this 31 years, everything looks great". I said I've had this body 47 years, something is wrong. After a ct scan, they said everything looks great, but we see something on your spine, get an MRI. That's when they found what was really wrong. If they had listened to me, I could've saved 8+ weeks of misdiagnosis and an infection eating away my spine.
But no one listened.
#43
Another patient here, wasn't wild for me but apparently for my doctor:
To set the scene, my mum has AS, my great grandpa had it, my grandpa isn't diagnosed but has a few symptoms. I was tested positive for the HLA B27 gene as a toddler and grew up seeing my mum's symptoms and sometimes assisting her. At 19 or something I started getting mild pains that got worse in some situations. After some time, I went to an orthopedist near my house (easier to get an appointment and closer by than a rheumatologist).
I served the whole thing on a silver platter for him: my mum has AS, I have the gene that makes it more likely (didn't know the name of the gene by heart back then), I'm having pains in a joint that my mum has had a lot of trouble with as well. In short, I think it's AS. The doctor straight up told me "yeah no way, there is no such gene. Your joint is just blocked." Tried to (painfully) unblock it to no avail and wanted to get me to accept some kind of shot into it. Not being a fan of needles I declined that one, and decided to eat the waiting time and the longer drive to the rheumatologist instead. Surprise surprise, I was right and I have AS, exactly what I served on a silver platter to that idiot doctor who pretty much declared it impossible.
#44
Healthcare student/premed here, but in this case I was the patient.
There's a relatively rare genetic disorder that I correctly diagnosed my family with. We were looking at a case study to essentially familiarize ourselves with the concept of "horses, not zebras--but, also, zebras are real". For privacy, I don't want to name it or give the full details, but it's basically a disorder that affects multiple people each generation, but may manifest differently per person and can often be misdiagnosed as more common disorders. The symptoms and diagnoses each person in the case study had mirrored my dad's side of the family almost perfectly. Like, it wasn't 1:1, but god damn if it wasn't freakishly close.
So, I pushed my surviving family members to participate in a genetic test for this disorder.
We have it.
Typically, it would have taken way more testing and investigation (and tons of pushing back with doctors) to get a diagnosis. They say most people wait 5-10 years for a diagnosis. In less than a year, we were collectively diagnosed.
Edit: while I appreciate and understand people's curiosity, I won't be disclosing the disorder. It's rare enough that I have a (perhaps paranoid) fear of being identified online from it. People who I know IRL are on Reddit.
#45
UK based, so apologies for any unfamiliar terms for other Redditors. Not answering the question, but I’d say it’s an adjacent scenario. My best mate growing up is now a consultant, but after completing his training to become a doctor he then studied at the Liverpool School of Tropical Medicine.
He had been working abroad in South America as an expedition medic and came home for a few weeks to our relatively small rural town. We have a relatively small hospital, but as it’s the only one for several hours it’s fairly well equipped for the size of the town. He started to come down with something and it was hitting him pretty hard, and he ended up in an isolation unit as they couldn’t diagnose him, but given his background he ended up with consultants, doctors and student doctors from all over the hospital coming to see him to ask his thoughts on it and what the best course of treatment would be given that he was the only person in the entire hospital actually qualified or experienced to deal with it.
Edit: sorry folks! I left out what it was. I’m fairly certain he had Western Nile Virus.
#46
My husband was the patient so not a doctor BUT. He starts having severe stomach pain. Eventually it’s so bad he can’t stand up straight so when he gets home from work, we go to the ER at the IHS. She examines him and says he’s constipated. We think this is weird bc he’s been pooping but ok we will take the stuff. Im convinced though it has to be like, appendix/gallbladder/something like that.
A few weeks later, it’s still bad. Now, he’s bloated and gained weight (seemingly) and has SEVERE night sweats which was new. But, following doctor orders. Middle of his shift, texts me he’s going to the ER again bc something is wrong he can just tell. Little while later, phone call that they are ambulancing him to the nearby city because a couple weeks ago, his appendix ruptured and was now the size of a football and he was just filling up with sepsis. We knew it, but got told to take laxatives.
Not WILD but it was just shocking.
One year later exactly it happened AGAIN when he was on a work trip in Fargo and he had to drive himself to the ER. That time, they removed it.
#47
My sister is the weirdest one, I think. A few years ago, when she was in her early thirties, she started having bad headaches out of nowhere. After trying a bunch of OTC meds, taking sinus meds, and changing her mattress and pillow, she called me one day and said, “I think this is a tumor.” She didn’t have any definite red flags at the time (a couple of yellow ones, but no red), but she was sure of it and also weirdly calm about it (particularly since our maternal aunt died of a glioblastoma, an almost universally fatal brain tumor). After a couple more weeks of doctor’s visits, she finally got her brain MRI. Though she didn’t know the actual results yet, she called me after and said it was definitely a tumor, because the radiologist added a contrast study after the initial images because they’d seen ‘something’. A few days after that, she saw her neurologist for the official diagnosis of…a brain tumor.
Thankfully, hers was not the malignant glio our aunt had, but a completely benign acoustic neuroma. It was big enough to require brain surgery, so it was still a very serious diagnosis, but at least it wasn’t cancer!
#48
I’m the parent in this situation.
My kiddo was sick with really vague symptoms. She’s developmentally delayed so it can be extra hard to really get a lockdown on what she’s feeling.
I pushed and pushed doctors, they told me it was the flu, stress, her period. I asked if it could be mono, and was told nope, definitely not that.
A month into it, I called up a friend of mine who is a doctor. I asked if he would test her for mono.
He agreed to test her, not believing for a second she had it.
She did. He laughed his a*s off when he called me and told me, saying “honestly I wouldn’t have ever tested her for that except you asked me to.”.
#49
I self-diagnosed psychotic episodes after having about 8. I confirmed it with my psychiatrist a few days after I figured it out.
I've since been repeatedly told that it's impossible to self-diagnose a psychotic episode.
#50
Similar experience but a bit different… I always had anxiety and was paranoid that “if something bad was gonna happen to someone” I knew it would be me. Like I just knew I had terrible odds, and just this feeling of constant impending doom or dread. At a certain point I thought maybe it was because I was going to die early or something… and then both my kids were diagnosed with a genetic terminal illness. I knew right then and there that was it, and strangely the feeling just stopped.
#51
Patient here. Fell out of a taxi after a day of drinking. Got to my mum's house and I just KNEW I'd broken my ankle **again**. I knew the pain, I knew the swelling.
Mum takes my drunk a**e to A&E, and I think because I was still very hammered, they left me in a wheelchair for 12 hours before I had an x-ray, and sure enough....my ankle was broken in two places.
#52
“I’m going to die”
- a spot on diagnoses from a women right before she went into cardiac arrest. That was eerie.
