Doctors, What Is the Rarest Disease You Have Seen a Patient Correctly Self-Diagnose?

[@karenmathews575]

In the 60’s and 70’s my mother ran a small nursing home. When a client was showing health problems not related to known ailments,she’d take a walk next door to our neighbor,who happened to be a retired veterinarian . She would present the ailment saying, If you had a pig showing…..what would you recommend? He’d give his opinion. Mom would then call the doctor to make an appointment or the ER and relay her thoughts to the medical staff. Nine out of ten,he nailed it. His patients couldn’t speak. After 50 plus years treating animals he had a pretty good idea what they were telling him.

[@0mfgeeze]

The irony is vets tend to look at the symptoms and treat the body systemically. With people doctors just want to prescribe you a pill for the symptoms, sick animals are bad for buisness but a sick human is good for buisness.

[@marionpeebles3836]

I always tell my vet I’m going to go to him and have stuff done because it’s so much less expensive I had had a cat that had a horrible abscess did everything to slice it open and drain it shot and anabiotic‘s was like $150 and he said well yeah I had a friend who had an abscess on his leg and he had me come over and clean it out on his front porch. He said the guy’s wife was so mad because it made the house smell so horrible and they were outside

[@hollyhayes9640]

I believe veterinarians and doctors actually have roughly the same medical training. They have a few different classes, but you have to get a medical degree to be a certified veterinarian. (I want to be a vet myself, so I've looked into the requirements to become one.) Vets are basically just doctors, but for animals instead of humans. 🐶

[@adelerodriguez2432]

​@@hollyhayes9640well, animals get the same diseases and illnesses we get. They get the same meds we get.

[@GyeongmiBaeb]

Tay-Sachs is inherited. If the mother knew she, the father, or both carried the trait I'd say it's pretty logical for her to expect her child had it

[@Chrispack93]

Tay-Sachs is inherited autosomal recessively. That means both parents need to have the defect gene in order for their child to get the disease. That makes it rather easy to self-diagnose, you're right.

[@carolsimpson4422]

I've heard that many Aneshkazi Jewish couples test for Tay Sachs and choose not to marry if they both test positive for this gene. There's a heart breaking movie about a couple who went through this- I forget the name but it stars Joaquin Phoenix.

[@Chrispack93]

@@carolsimpson4422 That makes sense because Tay-Sachs is, apparently, really common with Jewish people. And I think the movie you talked about is called Two Lovers.

[@sarahsbakingcreations]

Apparently it's common amongst those with Eastern European Jewish heritage.

[@pinstripesuitandheels]

@@Chrispack93 it's because of the limited gene pool they choose to marry from.

[@Liu-gr7is]

The person with Trigeminal Neuralgia has my sympathy. I was diagnosed last year. Treatment is mainly anti-seizure meds. Unfortunately, they only work for so long then it comes back. The pain is unimaginable. They don't call it the "suicide disease" for nothing.

[@annnewton2878]

-My sister suffered with this for years. She even had surgery to have Teflon sleeves fitted over the nerves which only worked for a little while. She finally got approved for Botox injections and has been pain free for two years or more.

[@GyeongmiBaeb]

I can definitely sympathize. I have sickle cell disease and though the pain isn't usually neuropathic, mine does. The pain crisis' are truly debilitating

[@Rob-dk9mn]

I have heard of this terrible condition and though I am not a Doctor you might want to consider psychedelic mushrooms for relief and control of flares. Please consider it the mushrooms will not kill you but that condition can.

[@Thiccness_Is_Delicious]

I have the ragged red fiber gene it’s not nearly as bad as yours but trust me I know how it feels to be a rare specimen so to speak.

[@vyse102]

@@Rob-dk9mn Psychadelics have been proven (if I recall correctly, which I may not) to help rewire the brain and help deal with pain. There may be something to this.

[@Jadyra]

I self diagnosed a ruptured appendix and the doctor, this was in Calgary, Canada, told me all I had was a stomach ache. I had been in pain two days by that point. I reminded him you don't show ALL the symptoms and demanded another doctor. Needless to say, another Dr came in and confirmed my diagnosis and I spent the next two weeks in the hospital. All that because I wasn't throwing up!. Damn shame I couldn't sue the other doctor, because I would have LOVED to.

[@marinam.2293]

I'm currently going through the required testing to be placed on the liver transplant waiting list. During a phone appointment with a nutritionist, I started crying - because she listened to my description of the problems I'm having and didn't interrupt, shut me down, or tell me I'm wrong and "that's not how it works", something that I've been hearing from my doctor for two years. (How dare he tell me that I'm not feeling what I'm telling him I'm feeling?!) The thing is, I know what's going on with my body; I deal with it 24/7. Doctors, please LISTEN to your patients!

[@emilypresleysee]

Not diagnosing myself but a time when I thought my doctor was an idiot: had a really ugly, odd shaped red mole on my leg that was about the size of a dime. Went to a derm to get it checked out. She said it looked fine. I hated it (vain, 19 year old college student) and wanted it cut off. I ask her if she can, she says yes. Ask her if my insurance will pay for it, she says yes. Ask her if we can do it right then, she says yes. Every yes was followed by a "BUT it will leave a flat, white scar" to which I respond "that's better than this ugly, red, scary looking mole!" We go back and forth before I tell her "I'm NOT ASKING YOU if you can, I'm TELLING YOU that's what I want done RIGHT NOW before I leave this office today." She send another guy in, he does it, makes me sign some paper because protocol says they have to get everything biopsied that they cut off people. I get a phone call 2 days later asking me to come in the next day to excise the margins because it came back as containing PRECANCEROUS CELLS. AND THE BITCH ARGUED WITH ME ABOUT CUTTING IT OFF. I could not believe it. Oh well, my vanity actually served me well in that instance. Moral of the story: self-advocate. If something bothers you and what you are asking for isn't unreasonable, you are allowed to insist on receiving care ASAP. Also, get your moles checked; if a brown one turns red, cut that bitch off and get it biopsied!

[@episus]

Your persistence probably saved your life, damn.

[@heartofthewild680]

I already had the diagnosis for ADHD, but I didn’t know about it until I asked my mom if I could get tested because I found a tumblr post about how ADHD is a bunch of neuroses in a trenchcoat, and I’d gone down the list of them thinking “that’s me, that’s me, that happened twice today…” and realized I related to almost all of the symptoms they described, and when I looked for a venn diagram to see how many of them were just autistic traits (because I knew I had been diagnosed with autism), I realized that I had enough ADHD-specific traits to be worth getting tested. I don’t know how I went through 22 years of life knowing about one diagnosis, but not the other.

[@lyndapurnell6995]

My daughter had the same experience. She has ADHD and what was diagnosed as Aspergers. It is said that you shouldn't put labels on these things. But my daughter was delighted because she finally realised why she felt different from most people.

[@patiakreles]

I self diagnosed my ADHD and went to see a neurologist to get tested. She was very skeptical because I have a degree in the best uni of my country. I wanted to die like every single day of university and it took me so long to finish it, but people see the degree and my grades and assume that it went smoothly. I suffered a lot and have been suffering my years of work because I have to do a ton of very repetitive tasks that are very boring. I'm 28, so there are a lot of people like you that get diagnosed in adulthood! With the diagnosis life gets a little bit easier, I feel... Now I know why I have a hard time eating (because it's boring) and why I cannot finish my tasks, lol

[@ShaunDreclin]

I'm on the other side of the fence, diagnosed adhd pretty young but strongly suspect I'm on the spectrum as well

[@heartofthewild680]

@@patiakreles I didn’t get diagnosed in adulthood, I just didn’t know I had been diagnosed until adulthood. But I suppose the difference is just semantics, so your point still stands.

[@lizichell2]

Sometimes you can feel really helpless against medical professionals who don't take you seriously. It's the classic arrogance of people who have been to university and think they are better than those of us who haven't. I hope I never get a serious issue because I know my drs surgery won't help.

[@nekograce7914]

In 2014 I started my journey and I’m still only at severe fibromyalgia even though we know I have an autoimmune just not sure which one. Lupus? I think so but my rheumatologist is still on the fence. RA? Not so sure about that either, could be Ankylosing spondylitis. I’ve got Raynauds syndrome which doesn’t help on a diagnostic level and every day I become more and more positive that I have MCTD. It’s 2021, and I started this ride in 2014. Even when you’re doctor is fantastic you still think you’re losing your mind. But I did learn that fibromyalgia has little to no research or funding going into it. It’s like migraines (which I also suffer from but I’ve had those since I was way younger), we still hardly know anything about it or why it happens in ppl (fibromyalgia or migraines)

[@lizichell2]

@@nekograce7914 best of luck finding a diagnosis.

[@lisacallan5462]

It took 7 years from onset of symptoms to get a diagnosis and another 3 for proper treatment. It's absurd, honestly.

[@frozenturtl827]

Dude, they e seen people diagnose themselves with this stuff hundreds of times. It’s justified. Also, since when did they think they’re better? They’re doubtful that you have this insanely rare disease. They are professionally trained, they professionally know this stuff.

[@frozenturtl827]

But I do agree they should take stuff more seriously. It may not be as serious as what the patient says, but it could very well still be something.

[@GrifoStelle]

Ah the csf leak. I remember that story. The woman fought and fought not to be brushed off with nasal sprays and allergy meds. Finally she went to bed with her head hanging off her bed and caught her CSF in a mason jar. The doctor knew from the look that it wasn't just snot.

[@sarah.5524]

I love this "vets are well trained" thing. Like they didn't go through just as much if schooling to become a veterinarian. They're doctors, too. Yeah they're going to know about zoonotics. Zoonotics are a decent portion of pathology. In a lot of cases, that's her off in the front line and preventing the spread of zoonotic diseases to humans.

[@Cheesus-Sliced]

Veterinarians are *better* educated than doctors

[@michelewalburn4376]

I'm going to admit on here where nobody knows me that I have gotten examinations by the vet when I took my dog in and I was sick. Lol. Oh and if y'all didn't know this, you can buy antibiotics at your local feed store. No need for a prescription for fish antibiotics. Seriously. They're perfectly safe for humans.

[@Cheesus-Sliced]

@@michelewalburn4376 alternatively just have reasonably priced pharmaceuticals like the rest of the modern world

[@sarah.5524]

@Jeremy Redenbacker you realize it was talking about people doctor not believing vets about zoonotics?

[@Arya-we7vf]

@Jeremy Redenbacker My guy, you're the only one here ridiculing people and being condescending, but sure, act like Sarah's the bad guy.

[@2ctheocean]

I self diagnosed my self with Endometriosis after years of having my nurse practioner mom in reproductive medicine tell me it was normal to be debilitated during periods. I finally went to an OBGYN when I moved out and within ten minutes they gave me a diagnosis based on symptoms and confirmed it with camera a week later. Mom has not stopped apologizing yet, its been like 8 years. To be fair she's nailed every other diagnosis anyone in my family has ever had.

[@elizabethmartin6707]

Not exactly rare, but my mom insisted that her arm was broken while the nurse just said that she was drug seeking. Guess who was right? Bonus points if you can guess which side was believed by the hospital staff until the X-Ray was taken.

[@enenenergp]

Just like.. how dare they judge people before they even test anything out, it’s just awful.

[@shmokeythebear5352]

I think its wild that some people have to convince a doctor to help them.

[@lentilneeds]

I diagnosed my own glomus tumor TOOK ME THREE YEARS AND THREE ENT SPECIALIST FOR THEM TO BELIEVE ME. I’m a med student too.

[@onlyme4555]

The one who had the imperforate hymen was kinda lucky. The blood backed up so far in me (according to the surgeon) I was 2 weeks away from dying and it took months and months of agony before they finally decided to surgically investigate

[@meemurthelemur4811]

2 months ago I went to the ER and told my attending that I had not 1 but 2 DVT's. I then proceeded to show him exactly where they were and how big they were. He didn't believe me, but ordered a doppler anyway, just to humor me. They were both there, exactly where I said they were, exactly the size I said they were.

[@gabrielacavalcante2188]

I correctly self-diagnosed with three rare syndromes that dozens of doctors and experts missed. I have hEDS, POTS and MCAS, the difficult part was to explain my suspicion to the doctors, several ignored me and told me I was: a child and didn’t understand, pretending for the attention, psychologically causing my symptoms, exaggerating, believing everything on the internet, etc. and then a doctor specialized on those conditions realized that I was actually right. 18 years of random symptoms, diseases, bunch of medication, chronic pain and 4 almost death situations explained with the correct diagnosis. Always stand up for yourself and your health!!! I also diagnosed myself with the mumps, one doctor said it was a lymph node inflamed and the other said with a lot of confidence that the mumps doesn’t cause fever, the next day I woke to gigantic and painfully swollen glands on my throat and my otolaryngologist diagnosed me correctly with the mumps, some doctors just need to go back to school

[@adelerodriguez2432]

The old doctors had to go by experience and instinct. Today's doctors rely on tests.

[@junrobin9335]

I had the same with my autism diagnosis. I was diagnosed so late because 1. I am a girl, and they still rarely diagnose girls in my country with it. And 2. everyone just thought I was odd. When I watched a movie where the main character had autism it fit me to a T. Add in the stress of divorced parents and so on it took me, checking myself into the hospital to get away from all the stress and depression to get diagnosed with autism, burn out and depression. The last two worsening my stimming behavior to the point I couldn't go without stimming at any moment in the day or night. Sleep was horrible. And changes where made after my diagnosis and now I'm doing great. Dislike that I got written off for autism, because I'm a girl though. Only at the hospital did they go oh she clearly has autism. Because I got so bad with the stimming it destroyed my sleep.

[@mistylee717]

I diagnosed myself with slipping rib syndrome. My doctor was like, “what now? What’s that?” I emailed him links and he agreed. I’m getting surgery soon. I’ve suffered with this pain for over a decade.

[@UnicornsPoopRainbows]

Props to the doc for not having an inflated ego about it!

[@markie2585]

went to my family Dr. one day with red spots that turn into bruises on my legs for no reason...went to get blood work done...when waiting for the test that day I google my symptoms and webmd had a list of potential causes and the one on the list was leukemia...was praying that it wasn't that... a week later...it was leukemia...diagnose on November 13, 2020...been in remission since Dec 2020...last chemo was in March

[@adelerodriguez2432]

I hope you are continuing to do well.

[@seatbelttruck]

So... basically "you'd have to be psychotic to self-diagnose a psychotic episode, so we're giving you an antipsychotic to stop you from incorrectly diagnosing yourself with psychosis." ???? I correctly self-diagnosed with Aspergers when I was 10. I didn't get an actual Autism diagnosis until I burned out in college over a decade later. Especially frustrating is that my first-grade teacher suspected I was Autistic, but because I was so comfortable with the pediatrician I'd been seeing since birth I didn't demonstrate any of the typical behaviors for him when my parents took me in to have that checked. By the time I saw a psychologist in high school I'd learned to mask well enough that she missed it too, until said burnout episode.

[@Arya-we7vf]

I believe they meant that the doctor said it wasn't possible to self-diagnose a psychotic episode and it was probably something else, but then found out that it was, in fact, a psychotic episode and the doctor was wrong.

[@stadot1427]

Took three women in three different cities telling me I should see a psychologist for me to find out I have autistic tendencies. Turns out I wasn't 'masking' so much coping via discipleship. Unexpected plus of being a Christian.

[@TheDNDWizard]

Thanks to reddit, I had asked my doctor to test my B12 levels, thankfully she humored me after I told her the symptoms I had been suffering with for years and told it was just my depression. (Chronic fatigue, tingling in my fingers with heat exposure, sores on tongue, poor balance, and brain fog) Thankfully I did ask and had them tested. Was pretty dang low! Now I'm in the process of treatment.

[@bruhbab0oey]

I was in and out if hospital for months. I was paralyzed from the waste down out of no where and all of the doctors thought I was lying about it. Finally found a doctor who diagnosed me with guillian-barre syndrome. (Gbs) After a month of being in the hospital and have to go through over a year of physical therapy I was able to learn how to walk again. This happened when I was in 7th grade, being a senior in highschool now I am basically back to normal but just recently learned I place my feet wrong when I walk in a way that hurts my shins. Guess I have to relearn a few things still

[@bruhbab0oey]

I also correctly self-diagnosed myself with autism after years of being called a “troubled child” I’m in progress right now of getting the official diagnosis comepleted

[@stephieg]

I used to be an adult figure skater. Started having muscle weakness and pain all throughout my body and I knew something was not right. We have several neuromuscular diseases and autoimmune diseases in our family. Knew it was probably one of those but wasn't sure which one because any of them could be causing the weakness. Went to a neurologist who did a few tests who told me I was overtraining. Went to a different neurologist who tested for every single one of the diseases that run in our family plus a few more, concluded that it was not any of those and sent me to an older rheumatologist who did one set of blood tests and told me it was all in my head because my blood work did not match any autoimmune disease he knew of. Ended up switching to a younger doctor after a while and he did a whole bunch of tests the first appt and found that I have an uncommon form of an autoimmune disease that runs in our family.

[@elyurias3910]

Man, super impressed with the person who correctly diagnosed Guillain-Barre. It took several different doctors and eight months for me to figure out I had that.

[@missingallmymarbles7670]

First polycystic ovarian syndrome, aspergers, dyslexia, and then celiac disease…also I’m allergic to raw celery, raw carrots, and red peppers. My parents didn’t believe me about the celery and carrots until I was in college. I’ve had more than one doctor hand me off so that they didn’t have to deal with everything anymore. My current PCP is amazing thankfully and has helped quite a bit.

[@veronicabigham9674]

I correctly diagnosed myself with patella alta causing recurrent knee dislocations. My parents didn't believe me. Once I moved out, my knees started to feel arthritic so I went to the doctor and told her what I thought, she kinda scoffed and when she did her exam and took an x-ray said it was the worst case she's seen. 1 year of physical therapy and being tossed around 7 orthopedic surgeons later, I finally found a surgeon who was willing to operate and I'm on the road to recovery 👍🏻 Glad I went when I did, as it's very easy to get arthritis with this condition

[@dermiker]

I diagnosed my husband with rhabdomyolysis. He met all the criteria and there are only a handful of things that turn your pee, to quote him, "Pepsi brown". I saw the PA who officially diagnosed him a few weeks later and her thanked her for forcing him to go to the ER. She asked if I had any medical experience and I said, nooooot really.

[@Kreschavier]

Not really a self-diagnosis, and it's not that rare, but dad once pulled me into his room whilst I was in 7th grade and told me I had/still have Asperger's. Our family must carry it, because he told me that his grandfather/my great-grandfather had Asperger's as well.

[@HappyHoney41]

One of my employees told me her child had been sent home from ER. She told me what the child's symptoms were. I told her to take the child back to the hospital and have a spinal tap for meningitis. She did, and that was what it was.

[@pennykhamsa4704]

I self-diagnosed with acute appendicitis at age NINE, and ended up having emergency surgery about thirty minutes before it would’ve ruptured. I also realized when I was fourteen that I had caught flatworms from my cats and treated it by eating a ton of raw garlic, onion, and jalapeños for two weeks. No more worms. 😅 I have also correctly diagnosed myself with genital herpes, cold urticaria including a couple episodes of anaphylaxis, adult ADHD, PCOS, cPTSD with GAD and anxiety, bilateral De Quervain’s tenosynovitis, etc., all confirmed except ADHD so far. I diagnosed my aunt with squamous cell carcinoma-well, more accurately found some more cancer lesions on her back a few years after she’d had others treated on her face. I grew up reading medical texts and biology books, though, and my parents were anti-“Big Pharma”, so I didn’t really have a choice!

[@OreoKit3]

When I was a kid I was "accident prone" with a history of sprains, dislocations, and overextension injuries. My mother has also had this issue, and my grandmother. I was a little suspicious I had something called Ehlers Danlos Syndrome, and my mother and grandmother did too. But ignored it because I've always been ignored. I had a doctor at 22 years old diagnose me, outraged because while it wasn't completely obvious at first, I had some tell-tale signs, like natural overextension of fingers(my fingers bend back super far when naturally extended) and I have ridges down my nails, as well as a super common rib dislocation. I now have the joints of someone twice my age, my grandmother probably had it and my mother most likely does as well.

[@Mrs.Fezziwig]

Gotta love The Beighton Score. Just be prepared for stuff no one tells you about - EDS can cause urinary inconvenience, so do those Kegels. Also - if you get sharp rib pain, it may be a sublux. That's always fun. And I have recently had a 28 year old scar re-open. (ETA - I haven’t slept in almost 48hrs from pain-somnia & didn’t read your comment properly. Oops. I’m so sorry) On the plus side: tattoos are easy-peasy. My artist couldn't understand how I sat through my half sleeve without flinching once. Yay High Pain Threshold

[@jessicabohl933]

ooo i didnt know about the nail ridges i thought those were normal ill add that to my ever growing checklist of dr egnored symptoms

[@emmyg]

Hello fellow EDSERS I have subluxed or dislocated almost every joint in my body like your just sitting down watching tv and bam you shoulder or wrist sublux with out any warning or reason to it. Ugh and getting out of bed like you have to some times sit there for 5 mins putting joints back in place. That’s another thing I hate about EDS is you are tired and in pain constant.

[@ryderthesinful]

I wish this syndrome was known sooner. First time I experienced it was when I was 9ish (leg subluxated and it hurt a little to walk) so I had a doctors note excusing me from working out in gym class since they didn't know what was wrong. The teachers harassed me for I think half a year to get the note removed and said things to make the entire class hate me until I gave up and started doing the workouts without getting the note removed. I think it might have made things worse but I was also going through puberty at the time so everyone just thought it was growing pains. Years later, my shoulders subluxate about 3 times a week, I get near paralyzed when my ribs move, and I'm not supposed to run or lift more than 20 pounds. Just last night my thumb dislocated to the point I couldn't use it to eat, but luckily my dad reset it. Despite this, the only thing I have to help is a singular wrist brace for my right wrist.

[@emmyg]

@@ryderthesinful Hello fellow EDSer I am sorry you had that horrible experience I also had teachers like that because our syndrome is called a “invisible illness” so they think your lying because they can’t see it. Also look into finger splints they helped a lot with my fingers they keep them in place and look like cool jewelry.My dad also puts my joints back when I can’t my ribs dislocate also it sucks it feels like the wind goes out of you and severe pain.I hope you the best and if you need help just ask our community and we will help all we can.

[@hyperbomb02]

We were doing desert warfare training and I diagnosed my friend with scurvy even though the doctors and corpsmen didn't pick up on it. He was out at a "remote outpost" with only him and 2 other guys running a remote coc for the training exercises. He was out there for about 3 weeks. Over the last week he started to feel sick and just kept declining until they finally sent him back to "base side." Where I saw him at the little make shift hospital thing and I was talking to him about how he felt. He had his phone and he had told me the week prior that he was eating nothing but poptarts out of the MREs because no one else wanted them and he didn't like the MREs. The doctor and the corpsmen were hanging out at the same time but they weren't sure yet what was wrong with him. I asked him if he told them about his shitty diet. He said yes they didn't think nothing of it. I asked him if he ate anything else other than poptarts and "very little poptarts" when he started to lose his apatite. He said no. I asked him if he told the doctor his mouth hurts. He just looked at me waiting to make some kind of joke but I was serious, he just said "how did you know my mouth has been sore?" I said "give him an orange he has super early signs of scurvy". The doctor just looked at me like "wtf no" and I looked straight back at him, "what did you not realize that poptarts don't have anything nutritious in them?" And the doctor said there has to be something in them they are fruit flavored, and I gave him my best Ed Lover "Come on son!" I have ever dropped and went to the store and bought a box of poptarts and brought them back to him to keep.

[@melissamurphy5315]

Patronizing the crazy woman is something I heard a lot when I worked in an MS Community center. Diagnosing MS is already a difficult task but I heard how often they would just dismiss symptoms and order CBC and come back with some supplement or iron supplement. Edit: At least in response to the weakness and fatigue.

[@colinmoore7460]

I remember one where the Doctor said that there was only one case on record, and it turned out to be the same patient 20 years or so before.

[@stadot1427]

Got a gut feeling that someone I know had appendecitis after a morning of being slightly off and a little pain. On a Wednesday. Took the ER doctors until Friday evening to believe us and schedule surgery. Pain never reported above a 5.

[@KHTimeProtecter]

Not a self-diagnosis. My mother, when I was in my teens, kept getting nauseous and feverish and multiple ER visits over the years didn’t give her any answers. At a family wedding, I was talking to my great-aunt about it and she told me it’s actually a common thing for that part of the family and that it was their gallbladders. I told this to my mother, who told this to her doctors, who didn’t take her seriously until she had to demand that they actually look. Long story short, they took out the gallbladder and my mother hasn’t gotten sick like that since.

[@mistylee717]

My husband had flank pain when urinating. He was diagnosed with a very large kidney stone in his right kidney. The pai was on the left side.

[@misslissy7795]

I self diagnosed correctly with Ehlers-Danlos syndrome hypermobility and polycystic kidney disease..... Living in a very rural area and having to wait 6-18 months in-between medical appointments I have plenty of time to reach my symptoms.

[@Darkrosefae]

I did the same with EDS and lupus. Doctor didn't think that those were my problems but sent me to a rheumatologist, and yep that's what was wrong. My rheumatologist loves me lol. Every time I go in now he asks me what I think is wrong before we do any testing.

[@Emilyweasel2023]

I did the same with EDS and POTs because rheumatology and my GP didn’t believe me because I’m not as flexible as I used to br because my muscles are really stiff trying to hold stuff up. Waiting on an I told you so for ADHD

[@appieclnnamon]

Same with EDS, after a lifetime of being dismissed until my last PCP actually listened!

[@Darkrosefae]

@@appieclnnamon I was 42 when I self diagnosed and finally got a doctor who listens. It's such a shame doctors treat patients like unreliable witnesses to what goes on in their own bodies or worse hypochondriacs or worse than that drug seekers. I had one doctor I went to who asked very snidely "what do you want me to do? Give you pain meds?" I told him I would rather he play doctor and figure out what the F is wrong with me. Needless to say that was our last appointment.

[@jessicabohl933]

im like 95% sure i have eds but no one (even the rheumatologist) believes me because i dont dislocate fully even though i meet the criteria so ive given up and fully exspect to just keep surviving in pain

[@MachallaNaNaNa]

I diagnosed myself with basically everything wrong with me. Depression, diabetes, ADHD, endometriosis, and hidradenitis suppurativa.

[@jackdawjohnson7436]

14:13 this reminds me of how I was browsing memes for people with Autism and realized that, hey, that sounds pretty familiar! I told my parents and they were like, “no, it’s just PTSD.” My therapist recommended me for diagnostic testing and turns out you can have both!

[@nogoat]

12:10 House : Impossible. But seriously, no matter how big a jerk, he wasn't arrogant and never had trouble correcting himself ( in the context of a diagnosis ) when proven wrong.

[@america_grace]

diagnosed my boyfriend with a ruptured appendix. he thought he had a bad stomach bug and only wanted to go to urgent care. forced him to go to the ER. dropped him off and told the staff I thought his appendix ruptured. they took him in immediately and sure enough, his appendix ruptured. they took him in for emergency surgery. his doctor told me “i’ve been doing appendicitis surgeries for 20 years and this is the worst one i’ve ever seen.” he ended up going septic and was in the intensive care unit for 17 days. thank god for MA’s incredible health care systems or my boyfriend could have died. i often remind him of the time i saved his life by not taking him to urgent care, just for the hell of it 😂

[@AdodgerWho]

As someone who self diagnoses correctly often, I have to wonder why some doctors refuse to listen. I'm not a medical professional, but I self treat everything unless it requires a prescription or is life threatening. Over the years, I've learned as much as possible about different ailments and if I go into the doctors office, I usually tell them what's going on, what medications I need and explain why I'm sure. The last time I was wrong, GWB was in office. They run their tests, and they come back saying, "well, you were right." Yeah, I'm only here because I can't get the medicine without you.

[@Arya-we7vf]

I've never understood it either. People can be wrong, or jump to the worst possible conclusion when they have something much less sever or vice versa, but the worst outcome you can get from at least entertaining the ideas of someone who self diagnosed is the tests coming back negative. It could be seen as a waste of time to test for the illness the patient thinks it is and it be wrong - but it would be even more of a waste of time to not test for it but test for other things it could be, have all of those come back negative, and then the patient ends up being right from the start. Even if they are wrong, at least knowing why they thought it was what they self-diagnosed as can help because then doctors know that they're looking for something that fits that description. And then there's psychological issues, which have such a stigma against self diagnosing, but finding out about a disorder and thinking "hey, that sounds like me" is how many people even know there's a problem that needs to be diagnosed in the first place. If I hadn't known social anxiety was a thing, I probably would have gone my whole life thinking I was just awkward and shy.

[@elizabethfarrar2515]

You are me!

[@AdodgerWho]

@@elizabethfarrar2515 I grew up self treating injuries. As early as 4, I have memories of dealing with things most people would rush to the doctor for. A literal lifetime of treating myself. Impalement? Is there a major blood vessel near the injury? No? Great news! Not a joke, I've treated impalement more than once. The easiest was a 7 inch long wood splinter that went through the back of my heel to roughly where my toes start. Soaked it for an hour, softened the wood, the slowly removed it and flushed with iodide. Kept an eye on it for infection, treated with topical antibiotic, and I don't even really have a scar anymore. If I'm going to the doctor, it's because I know I need something only they can provide, or it's too dangerous to do myself.

[@rosevampire3755]

I diagnosed myself, my father, his brother and his son with EDS. My grandad and some of his sisters had it too. I met a guy who had it when I was 13 and realised I had literally every symptom he had. Googled it. Had every symptom my entire life. Same with my dads side of the family.

[@SkateboardCaes]

I have previously correctly self diagnosed myself with bursitis of the elbow as well as appendicitis. I’m about to school another specialist about hemmeroid inflammation

[@LeMayJoseph]

I had these strange red plaques on my skin, biopsy was negative, looked up the other symptoms I had, and came to the conclusion I had Tumid Lupus. Doctor disagreed, that was too rare, then told me I had (I wish I was making this up) "something funky." Go to see a dermatologist. She performs some tests, weeks go by, months. Finally, some two years after I self-diagnosed, I'm diagnosed with Tumid Lupus.Best part is the dermatologist says it all slowly and tries to explain it in simple terms, and I just interrupt like, "yeah I know, I looked it up two years ago, and I actually already told you that weeks ago. Excellent note-taking, doc."

[@abfarrow3596]

15:25 my mom did that too. Except she didn't have appendicitis, I did. That night I went to the hospital and within a few hours I was going into surgery. I'm so glad the doctors didn't make me wait days before operating like I've heard they've done with other kids, but it was still pretty bad and apparently took like an hour longer than they expected. I'm ok now 7 years later.

[@LadyLakeland]

I dont think it's a particularly "rare disease" (but def far more rare than some of these) but in 1956 my mom was born and she would not hold any food down...so much so that she was not really gaining weight like a normal baby would. The doctor kept telling my 18 year old grandmother that she was just a nervous first time mother and that my mother wouldn't vomit if she was not so nervous. But my mother was beginning to look so bad that her grandfather told her dad that he "expects this will be the last time I see her alive" when they brought her to visit him. So my grandfather just had to take the situation into his own hands at that point. He drove about 3 hours to a library with medical books and he spent a day or 2 there looking through them all, came back and told the doctor he must check my mother for pyloric stenosis. He was sure she had pyloric stenosis. He was sure she had it because she def had it, and they went into surgery for that immediately and my mom didn't end up dying of starvation and my 18 year old grandfather with practically no education really made that doctor look like a dangerous fool that almost killed my mother. Then in 1993 when my mom had my sister and she kept vomiting, she was immediately able to tell the dr my sister had pyloric stenosis and they both have matching stomach scars and they were so sure because my grandfather diagnosed my mom by flipping through a library of medical books in 1956. Lol Imagine what the man could've done with access to the internet. Lol

[@ostlandr]

My mom always wanted to be a doctor (specifically a diagnostician) but we couldn't afford food sometimes, so forget med school. She met with a lot of local people regularly at her office, and every so often she'd have a customer talking about their "aches and pains" and Mom would tell them "You should see your doctor, I think you have X." She was usually right. Interesting that years earlier, when her lungs were damaged by chemicals at her previous job, her doctor didn't figure it out- the local veterinarian did.

[@hollyhayes9640]

Veterinarians have to have the same training as doctors do, but for animal medical needs instead. (I've wanted to be a vet since I was a toddler (1992), so I've looked into it.) (They both require you to have an MD.) 🐶 Vets are basically just doctors for animals instead of humans.

[@nuclear_vampire]

My periods were always super irregular, and when I did have them, it was like crime scene levels of blood. On top of this, my body hair was pretty thick, and I had a bit of facial hair. With what I'd read, it sounded like PCOS, but when I went in to see my gyno, she told me I didn't have PCOS, and that I was just fat, without doing any tests. In shame, I left, but about 2 years later, while seeing a different gyno, she was like "You're aware you have PCOS, right?" Turns out my ovaries looked like clusters of grapes.

[@karenglenn6707]

I was diagnosed with Lupus in 2012 when I was 51. I had been feeling pretty crappy but nothing seemed to be related so I said nothing to my GP. I have to mention that I have had the same DR since 1989, and she noticed something wrong with the way I was walking. Did a lot of tests and discovered that I had Lupus. It is only because she knew me so well that she knew that there was something more seriously wrong than just getting older. I was actually bedridden for a whole year, it was awful. But I will always be grateful to my wonderful GP for finding out what was wrong with me.

[@loisreese2692]

When I was 23, I self-diagnosed bacterial endocarditis. I'd had it when I was 3 and spent 7 weeks in the hospital. First Dr I went to told me I had a sinus infection.

[@keels829]

Not a doctor but I looked up narcolepsy (a fairly rare condition) once just out of curiosity and realized I had most, if not all, of the symptoms. Asked my dr about it. She said yeah it sounds like you have narcolepsy. Went to a specialist. Got diagnosed with type 1 narcolepsy. Apparently feeling very sleepy all the time isn't normal and most people don't lose almost all muscle tone with certain really strong emotions.

[@keels829]

I'm also 99.9% sure I have partial anhidrosis bc I have never been able to sweat on certain places of my face (mostly my forehead) and that's a pretty rare condition too, but I haven't talked to a doctor about it yet

[@LMacNeill]

"I have chest pain in my toe when I poop." That one definitely got me. LOL!!

[@andrewgonzalez7143]

8:01 "the GP refused to order the tests until the patient was extremely sick" Ah yes, let's wait until you're unhealthy to test if you're unhealthy

[@Kyeju]

Ngl, the post about hidradenitis supprativa made me tear up, as I've had it for close to 17 years now, and only recently has there been solid treatment for it. I wouldn't call this self diagnosis exactly, but earlier this year I found lumps on my torso. My doctor surmised they were simple fatty benign tumors that could dissipate on their own, but gave me the option to have them removed. I'm glad I took it, because the biopsy came back for Rosai-Dorfman Disease: rare white blood cell disorder. Waiting on an x-ray and blood work as I type.

[@mustangnawt1]

My good friend has HS. Feel so bad for anyone that has to live with that. She’s had her sweat glands removed and is on serious injectables. Her immune system is not great, can’t get the COVID shot. She has twin boys and works everyday. My hero:) Screenshoted this for her just in case may help

[@jaidenvera5371]

I also "self diagnosed" and I'm 19 I've had it for maybe 2 years and I haven't seen a doctor about it but my mom is an rma and she doesn't believe me or even know what hs is and it sucks I get them on my underarms and my thighs and I have scars that are like pits in my skin and I get them around My groin area too it can be very painful if I don't use sheabutter or heat compress

[@JanJanheartu]

I’ve had HS since I was 12/13. Hid it for a while cause it was in my groin area and I was horribly embarrassed and disgusted with myself about the whole thing. Thought something was wrong with me and eventually asked my mom what it could be. Thankfully my mom immediately took it seriously and took me to see a dermatologist who confirmed that it was HS. Gave me 2 topical treatments and suggested I do laser hair removal in the area (only helped a little bit). Finally got put on birth control by my OBGYNO at 18 and it has been the only thing to control it from flaring up and causing immense amounts of discomfort and pain.

[@williamgeorge3111]

Diagnosed my mom with shingles after seeing a PSA about it a few days earlier. My counselor also says I might have Asperger's after I brought it up.

[@katrinaquezada42]

I have polycythemia Vera and am extremely young for it. No one would test me and despite my pain I just kept getting shrugged off. It’s not a genetic disease but I do have 2 other family members with the disease. Finally in my 30s found a a doctor who would take me seriously and test. Turns out I have it.

[@Killer_Turnip]

My brother had severe abdominal pain a few years ago. I knew he has a high tolerance for pain, so it had to be something major, plus he was pale as paper. He has a slight fever and where the pain was we both thought appendicitis. ER docs thought gastritis, and wanted to send him home unless pain persisted. I was getting ready to leave bc I had work soon, but I told him and my mother to not let him leave the hospital until he at least had an ultrasound or something. Not sure if they heard me or already had one lined up. Ultrasound found that his appendix was in a slightly different spot, that's why the docs didn't see anything wrong while feeling his abdomen, and it didn't look good. After surgery they said his appendix was already gangrenous. He's fine now.

[@biaise9052]

Plus : some symptomes are very hard to DESCRIBE, so the doctor don't get it. Then you read about it and the descriptions shows all the words you had on the tip of your tongue for years.

[@o.m9514]

5:20, you are right! I do wonder where all that teaching does.

[@karsten69]

My childhood doctor believed that people with ADHD just magically got cured when they became an adult... My brother got a herniated discus at age 18, but his doctor just shrugged and said, "no way you have that at your age." 3 years later he would finally get an MR (that almost got cancelled in the waiting room) and sure enough he had a herniated discus, but by then it was too late and no training could make him better, only slow the deterioration.

[@ronnihayes7582]

My mom had a wheelchair slam down on her foot at work. She immediately said it was broken. Workplace sends her to the hospital and work comp doc x-rays and says it's just very swollen and bruised. Convinces her of it despite her first instinct. She worked on it for 3 months before she couldn't take the pain anymore. Went to get another xray. Oh wow all metatarsals in that foot were not only broken (and were clearly broken in the first xray) but have now healed badly with bone spurs and everything. They operate to shave down the spurs and decrease some damage. Two days later, she says it shouldn't hurt this bad, something is really wrong now. Doctor says it's just healing pain and will pass. Yeah...she developed CRPS and is now officially retired because she can't stand, walk or sit upright for more than a few minutes at a time even while on a cocktail of pain meds. This is the same woman who had a gastric bypass and amazed the hospital staff by continuing to gain weight while being fed through an IV and extremely sick because the surgeon rushed an effed up the surgery and then split for his vacation, leaving the repair in the hands of another surgeon. The second surgeon came in the day she woke up, sat down, and said he would testify if she chose to sue the first surgeon. When I say I'm cautious about any medical care or advice I receive, I mean it. Which is sad.

[@muun9403]

1:20 yes coffee does cause increased bowel movements, since caffeine does that to your system. The best way to deal with this is to replace your creamer with milk. Creamer causes diarrhea in me personally and I can drink coffee with milk just fine, but not with creamer.

[@ravenrvd25]

"it's never Lupis" -House

[@matheussanthiago9685]

except for that one time that was

[@hawkins347]

@@matheussanthiago9685 that one time a janitor pointed it out 😂

[@Burning_Dwarf]

Broken sesamoid bone; they dismissed me for over a year... Turns out it was broken and it is now permanently fucked for walking on it for a year Also endomitriosis, took 6 gynos and 13 years to confirm

[@zupa9079]

If your doctor isn't taking you seriously, ask for them to write up why they denied you treatment/further inspection/etc

[@blandoatmeal1273]

Didn't fully diagnose myself but similar situation. Basically one night had such extreme pain in my right elbow that I woke up screaming. It faded quickly to a really prevalent ache, but some painkillers an I slept the rest of the night. What really started concerning me was the next the pain was spreading up my arm towards my chest and when I leaned forward, or especially when picking something off the ground, the pain in my chest spiked until I stood up again. Unfortunately I'd left it too late in the day to call the GP and get an emergency appointment so my mum being a nurse I decided to phone her and she thought it might just be a pulled muscles because I had done less than 10 chin ups a few days before. She did however say if you are really concerned call an out of hours line which I didn't know existed at the time... Got an appointment within an hour even though it was about 11pm at this time. Get there and the GP that saw me listened to my explanation and said the same thing you've probably just pulled something. I just kept pushing that this was not that, I know my own body and this is not muscle pain. Severe pain can make you really adamant someone should listen to you lol. Eventually he said something along the lines of "do you really want me to waste getting an ambulance to take you from here to an actual hospital?". To which I replied "if it will get me some treatment then yes". So the ambulance arrives and takes me to hospital. Both luckily and unfortunately for me the hour long ride in the ambulance increased the pain I was in and decreased my patience with any not taking me seriously. So I got an x-ray pretty quickly after arriving and guess what there's a large mass covering my heart.. If you pretend one fist is your heart and cover it with your second hand, the second hand should give you a good of what it looked like.. Tldr was told multiple times that my chest pain was just a pulled muscle, I disagreed. Turned out to be a large cancerous mass. Moral of the story. Don't let someone dismiss you're symptoms or try to convince you they aren't as bad as you think they are, even if they are a doctor. The person best suited to describe your symptoms will always be you.

[@cynthia1974]

Wow.

[@kat1722]

I correctly diagnosed POTS and EDS, my drs never listened to me. This year I finally got diagnosed with pots, and am still fighting to be listened to re EDS. I’ve had symptoms since I was a child but always diagnosed as ‘just anxiety’ until my IIH was caught by an optician (and fast tracked to hospital bypassing gp) 3 years ago drs listen a bit more to me and my nurse mum. It’s so bad during flare ups (frequent) I struggle to do anything more than lay on the sofa. I can’t go out without passing out and have to use a wheelchair.

[@tvaholicsquidney]

I don't have pots, have some other heart conditions plus at least 1 that hasn't been diagnosed but have been caught on my own home ekg machine, but am also still fighting to be referred to get diagnosed hEDS, but most dr's I talk to once they hear I'm diagnosed hypermobile, they ask if I suffer from dislocations they hear me tell them yes so they say they will treat me as having EDS anyway without an actual official diagnosis

[@kevg3320]

Lol, I had pyloric stenosis (min 12:20) when I was a tiddler. My GP was feeding me, as it always occurred straight after the bottle. His suspicions were confirmed when my vomit bounced off the wall. Funnily enough, a neighbour's kid, same age, 3 doors away with the same first name as mine had exactly the same condition. Both of us now have 4 inch scars above our navels!!

[@BRIDINC1972]

From early 2009 I began to have some weird symptoms and had gone to my GP who was equally confused, referred me to an Osteopath . Even they were confused. Late 2010 I had more confusing symptoms but from having watched a documentary about MS I immediately thought this is it. Both of my feet began to go numb progressively over 3 or 4 days until the numbness was over the ankles, when I went back to my GP I asked him to refer me to a Neurologist, after Lumber puncture, MRI etc guess what MS. Some of the earlier symptoms would only have been understood by a neurologist. Seems I've probably had it for decades as I've always been a klutz but a lot of that could have been early MS.

[@AlexCouch65]

November of 2019 i started having incoming upper central abdomenal pain and I've had recurring acute pancreatitis as a complication of crohns. Before the episode starts, i get heartburn, nausea, loss of appetite, and mild pain. I go to er and they didn't believe me that i was starting another pancreatitis attack because my lipase was normal. They sent me home. A couple days later in puking, bent over in pain, can't eat, and it's all much worse than it was when i first went in. I go back and the doctor i got was impressed that i knew i was getting another episode. My lipase was over 2300. I was in the hospital for almost a week... Again...

[@YourFavoriteSociopath]

My mom's boss diagnosed me with KLA when I was 6, and it took 20 years and 4 misdiagnosis' to get my diagnosis of... you guessed it, KLA.

[@magrad2010]

My husband has Chiari Malformation and Syringomyelia. His symptoms appeared while he was a child, and he was misdiagnosed slot. His mom was mocked when she expressed her concerns. One physician heard about his case, and caught it. They did the surgery, but he has terrible problems still.

[@splinky1633]

Nursing student, here’s some that I remember off the top of my head: I’ve seen 2 hypoplastic left heart syndromes. Type B interrupted aortic arch. Pulmonary valve atresia with intact ventricular septum.

[@SkylanceSolder]

Dad diagnosed me with EYE SHINGLES at 19 where normally people get normal shingles sixty and up. Nearly lost my eye if we hadn't caught it early.

[@adelerodriguez2432]

One of my nephews got shingles when he was in HS.

[@haleyboothe2769]

I have a slightly opposite story. I though I had pink eye so I went in, and told the nurse who was gather the list of symptoms/why I was in. The first thing that the doctor said when he walked in was "so I hear you have pink eye". He then proceeded to ask about my acne, and if I wanted to take anything that would help with it. I was annoyed with him saying I was just in about my eye. He proscribes the medication for pink eye, and only after he has he finally LOOKS AT MY EYE!!!!! I used the eye drops he proscribed for the timefame recommended, but there was no change. So I went back (saw a different doctor), who did a 2 min test that showed that it was a bacterial infection. To sum up a long story, the second doctor referred me to a specialist who discovered it was a corneal ulcer. As a result of this the next time I went to the doctor in a lot of pain I thought it was something to do with my gallbladder, but I didn't dare say it was. I was in surgery that night to remove my gallbladder, so I was right 1 out of the 2 times.

[@Exile_ok]

4:05 Man... this hits too close to home. As someone who's suffered a Wilms' Tumor, I honestly can't remember much. But I've lived a decade since then, and left my right kidney behind.

[@shopece8807]

It's absolutely disgusting just how many doctors will dismiss a patient and not do proper testing on a patient and would just quickly dismiss them as being junkies or drug chasers. The laziness and negligence smh.

[@MyBubbleInSpace]

My dad diagnosed me with narcolepsy half a year after I took the swine flu vaccine in 2009. The pediatrician said it was possible but a very rare disease so they wanted to exclude everything else first. Fast forward about a year and several different tests and lo and behold: The Pandemrix vaccine had given around 300-400 children and teens in the Nordic countries narcolepsy. And yes, I was indeed one of them.

[@ashgreen3574]

😱 but a vax never had a bad outcome ever ever before In the history of the whole wide world

[@jeymarrivera3471]

I self-diagnosed myself with Crohn’s after 5 months and 35lbs lost. Wasn’t far off, had the sister disease named Ulcerative Colitis. But doctors didn’t believe me even when I had to go to the ER cause half of my blood was in the toilet, I was just told it was my period. Got transferred to a different hospital, finally they agreed to do a colonoscopy and a endoscopy with biopsies. That’s when they found huge ulcers in my colon and I was finally diagnosed with UC.

[@nancym7844]

When I began getting severe pain in my right hip and leg, I had no idea what was going on. My doctor sent me for many tests to rule out other diseases and I saw numerous specialists. A Physical Therapist told me I had Regional Sympathetic Dystrophy. To over simplify it, my nerves are stuck, constantly sending pain signals to which my body responds by telling my muscles to protect the area. It's been renamed to Complex (not chronic) Regional Pain Syndrome and I can confirm it's painful as hell. I've been permanently disabled by for 17 years now...

[@reznovvazileski3193]

I still keep wondering what to tell my doctor on pain scaling really :') I like to be really conservative with the scale but it seems like doctors love to assume you're overestimating pain and mentally subtract like 3 or 4 from whatever you're saying. Like 10 to me is "give me a lethal shot I'm over it" pain, 8 is I'm getting drilled straight in the root canal without anesthesia which I have had to happen before which was undoubtedly the most agonizing pain I've ever felt but since it's short duration I wouldn't say I was ready to die quite yet. Then I got gallstones, started out like one or two episodes a month maybe an aggressive reflux feeling. The doctor assumed reflux had me on meds. Didn't work and the pain increased so went to look for an ulcer, nothing was found not even a hint of damage to my stomach or esophagus so once again assumed reflux and gave me the same meds for longer. By the time we hit about 2 years of me walking around with untreated gallstones at this point, I was reporting a 9 in my stomach and solar plexus region to my doctor when my gallbladder had infected to a point where even the surgeon (in the end when I finally got diagnosed and treated correctly) was like holy fuck dude how did it even get this bad without your doctor noticing. The doctor still insisted on reflux until I literally started spam calling him until he gave me an echo. Whoah who would've thought, there was actually something wrong with a guy with my pain threshold that's reporting a damn 9. Like wtf do I do here do I report a 13 so maybe he treats it like a 9?

[@hazeld8016]

I have correctly self diagnosed myself with hypermobile Ehlers Danlos syndrome, postural orthostatic tachycardia syndrome, and dissociative identity disorder.

[@Account-kv3jc]

What sucks is if you do sue a doctor or hospital for malpractice, any future health care place/ professional will most likely deny you as a new patient because they're worried you'll complain again or they don't want an inconvenience on their hands.

[@littlepotofsuga4106]

I definitely have a mild sun allergy, but my doctor won't even entertain the idea because it's uncommon..... It really sucks being brushed off when you're certain of something

[@Arya-we7vf]

​@TigerGold 59 It's a slight issue in phrasing, clearly people get what it is enough to understand what they mean if you know enough to correct them.

[@drippychoco3057]

@TigerGold 59 Sun allergy, other known as Solar Urticaria, is a thing and was discovered in 1904.

[@mollytheyorkie-poo7514]

I diagnosed myself with PTSD, depression, anxiety, as well as PCOS, tendinitis, and a musculoskeletal disorder when I was 13-14. I was right about all of them, and it turns out that my PTSD, PCOS, and EDS caused most of my health problems when I was finally "formally" diagnosed and told this.

[@Doodlenab]

When I was in high school there was a period of time where I kept getting pain in my knees, and I ended up getting referred to physio to try and figure out why. A couple of weeks before that appointment I told my mom that I thought my knees bent backwards an unusual amount and that might be related to the pain I was getting. She dismissed me saying that was normal. Then, at the physio appointment I didn't mention what I thought to the physiotherapist, but she had me do some tests (observing how I walked, my flexibility, etc etc). Low and behold, towards the end of the appointment she tells us that my knees bend backwards more than they should, and as a result as a child I had learnt to walk with bent knees to counter the instability. So because I walk with bent knees, it meant that the muscles and ligaments at the back of my knee weren't getting stretched enough and were tightening up, causing the pain. I still hold it against my mom sometimes lol

[@BrynnofStone]

My dad diagnosed himself with Guillain-Barre a couple years ago. No doctor he saw wanted to run the test bc it was invasive and could be painful. He told them he’d sit in the ER until they did it. 8 hours later they saw he was serious about that and gave him a spinal tap. Guess what…

[@mirageseekr]

I diagnosed myself with postural orthostatic tachycardia syndrome after watching an episode of “medical incredible”, had been misdiagnosed as intractable epilepsy for 7 long years, I wouldn’t wish anyone have to take those meds.

[@heididietrich9800]

I worked at a hospital and a patient came in my office saying "Why, why ". We had a psychiatrist on staff and told him about it. My boss said it was inappropriate. Dr. Ratner said he had no problem with me telling him about the patient. He wasn't arrogant.

[@kristinecollier8113]

I diagnosed myself with Cyclic Vomiting Syndrome. The first gastro never heard of it and he had been a Dr. for at least 30 years. Went for a 2nd opinion and he knew what it was and agreed with me! No cure.

[@laquandradelashondra9877]

I would think in general that the rarer the disease the easier it would be to self diagnose. Also, no one cares that you're early.

[@wolfyk95]

I once fell of a swingset and broke two fingers, as a teen one in three places. Mom brought me to the hospital and I told them casually I broke two fingers, one pretty bad and thee initial reaction from them was "based on you not being in much pain probably sprained". Sure enough broken, and they even said they were amazed I was so casual. I hav cerebral palsy and suspect it effects pain perception.

[@sunnymichelle]

I correctly diagnosed myself with Ehlers Danlos Classical type and diagnosed my Dad with Werinke-Korsakoff syndrome.

[@QueenSunstar]

I stumped my doctor for months with unexplained episodes of boiling vomit and stomach agony. I suspected lactose intolerance was part of it. It was. The other part was GERD. I mentioned how my grandpa had Barrett’s Esophagus. You could literally see the light bulb go off in my doctors head. An endoscopy, this time to look for certain markers, confirmed the diagnosis.

[@mj85432]

I don't remember this but my cousins have told me this story milions of times. I am autistic and when I was around 8 months I started to talk, at 3 years old I spoke extremely clearly and with "difficult words", at 4 years old I had teach myself to read and the doctor diagnosed me with hyperlexia. The thing is, for holidays or my birthday I was with my cousins and if they (or any other person) gived me a gift I didn't like I would just say "I don't like it" or "This is not what I asked for", my aunts though I was just a brat, my mum tried to teach me many times that I shouldn't be so blant about my opinions but I always responded with "But you told me that I shouldn't say lies" and ended up just not undestanding why it was wrong to say the truth only some times. I grew up don't understanding the jokes of my cousins, except for the ones my oldest cousin used to tell me, she also told my mum multiple times that "she has something else, she really doesn't understand it, and I think is weird she has trouble smiling". When I was about 6 years old my oldest cousin saw a movie or show or something where there was a character with Asperger's Syndrome and told my mother I had it, she (and all my family) said that I couldn't be autistic because I talked a lot and where really extroverted. At 7 years old I'm refered to a doctor by the school because I was being violent, I didn't undestood most social ques and enjoyed playing alone, with made me subject for bullying. The doctor said that I was an extremely clear case of Asperger's. Turns out talking too much is called being hiperverbal and can be a sign of autism and adhd the same as being non-verbal. At 15 I decided to stop using "Asperger's" to define me because it isn't a diagnosis anymore and Hans Asperger was a nazi that did some weird experiments and killed autistic children.

[@bread9173]

My mom diagnosed me with Chiari when I was 4 and she was correct despite doctors telling her no till I got an mri. Mri confirmed Chiari and REALLY severe. Newborn brother also had it. Also diagnosed myself with l autsim even though the doctors denied it cause "she's just a weird shy girl". Very obvious sensory issues, behavioral issues, social issues and no eye contact. Mom noticed this too and I guess she also diagnosed me right. At 18, my doctors diagnosed me. They now admit that if I was a child today I would have been diagnosed easily. I showed my symptoms way more as a child. My mom is a therapist btw and that is probably why she was able to diagnose well due to the amount of kids she sees with rare disabilities.

[@lukescheffe9851]

IMO, the only reason why a doctor should refuse to look into something is if they are in the process of saving someone else's life. Otherwise, after confirming that the patient understands that it will likely be expensive even if they don't find something, they should go ahead and check.