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

medical workers over at it what is the rarest disease you have seen a patient correctly self-diagnose i worked at a pediatric clinic and we had a mom properly diagnosed her nine-month-old baby with tay sachs disease he wasn't progressing developmentally and ended up passing away at 18 moss subarachnoid himaj guy straight up walked up to the desk and said i got a headache out of nowhere i think it's one of those spider himalayan things we didn't take him serious until the ct came back to be fair he was walking fine talking fine and didn't have any light sensitivity said payne was five stroke ten dude just could really handle payne well i recently saw a chart that gave you a scale for pain usually i'd say my headaches are like a four or five the chart says eight since they usually impede me from doing things because i'd rather just stay in bed until the advil kicks in but like i'm sure that being eating alive is much worse so far very freaking jealous of all these docs whose patients are helping out with the diagnosis mine are all i have chest pain in my toe when i poop lol i am about to go to my doctor and tell him i have chronic diarrhea and have tried to test if it is diet related and it doesn't matter what i eat but i have one more thing to try before i see him and it is going to suck coffee i was really hoping it was something else i had an 11 year old girl who did move her bowels for a week a week tell me she thought it was a girl parts that weren't working after a full work up and finally a ct of her abdomen and pelvis which i hate doing on kids because of the level of radiation i found out her uterus was so full of blood it was causing a full-on bowel obstruction her high men was so imperfect closed up she couldn't menstruate and all the blood just stayed in her uterus she required an emergency humanectomy and was sent home the next day hot dang if she didn't call it from the get-go reading this made my uterus hurt when my oldest was born he peeled a little like babies may do but it kept getting worse and he was flaky and had scales the pediatrician told me he had dry skin and to lotion him dr google claimed it was a condition called ethyosis but that was super rare so no one believed me anyway fast forward six months and a referral to a dermatologist later he's got ethiosis also after my first was born i had excruciating pain just under my rib cage mostly after i ate tums did nothing gas x did nothing do a little googling it sounds like gallbladder attacks only it's on the wrong side go to my gp get an ultrasound my gallbladder was full of stones get a referral to a surgeon who drags e feet for a month claiming it can't be my gallbladder the pain is on the wrong side meanwhile i have attacks after every meal and stop eating except ginger ale and club crackers lose over 10 pounds call the surgeon daily in tears finally he agrees to operate but right before the procedure tells me that once my gallbladder is gone i'll still have problems wake up from surgery and find out my gallbladder was worse than they thought so it needed to come out anyway 2.5 years later and i haven't had any more attacks guess it was my gallbladder after all bird might infestation the lady wasn't taken seriously at first came off a psych nope birds built a nest in her a sea ductwork thanks dr house for having your interns break into my house and rip it apart just looking for something anything patient here self-diagnosis still unknown fungal infection inside both eyes took making them glow with my rock lamp to get attention kept seeing strands in both eyes then wow that of lamp ended up on one heck of a cocktail to save my sight kids don't wash your eyes with river water in a tropical rainforest just say no a nurse friend brought her newborn to the pediatrician in 1963 and told him her son had a wilmed tumor the guy blew her off and told her she was a nervous mother and a little bossy boots kid was starting to crump when a pads on guy noticed and saved the baby she dumped the pediatrician double points for self-diagnosis before the internet a patient turned up clutching some internet printouts about visceral leash manages luckily i managed to resist saying anything sarcastic cause that's exactly what she had i appreciate it's not uncommon worldwide but in uk hospitals it's pretty dang rare and i was grateful for the printouts saved me a lot of searching same exact story when my son picked up leishmaniasis in iraq we went in with the printouts too as a physician and a med school professor it is distressing to read all of the i told the doctor i had entered the fairly common disease and typical symptoms here but s he didn't believe me we teach our med students to ask the patients if they have any idea what they may have docs need to take patient's opinion seriously much of the time the patient has already spent hours researching the disease and may have some experience with it especially if it is a familial disease i may require my students to read this thread i'm not a medical worker but my grandmother self-diagnosed herself with chiari she had been having problems and everyone in the family tried to tell her it was nothing she ended up needing brain surgery and still suffers from it i had a resident tell me a patient was in the air saying he had a worm in his eye why does he think that i asked because he feels something in his eye i patiently explained to the resident that often people have a speck of dusty ttc so you have to look carefully all around the eyelids under the slit lamp microscope as i was talking and examining the patient lo and behold a worm wriggled right under the surface and i jumped back and nearly fell off my chair it turns out the patient was visiting from africa and his father was a veterinarian who told him to come to the hospital to take the worm out these parasites are common in africa not so much in the us the entire infectious disease department was very excited the entire infectious disease department was very excited this is wonderfully nerdy as well as absolutely horrifying years ago a woman who had been taking calcium supplements made from groundhorse bones diagnosed herself with lead poisoning i recall she was a movie actress impressive in that i think none of her doctors saw this and there was at the time no reason to believe that a calcium supplement would have a lot of lead in it but of course animals store lead in their bones and until leaded gasoline was phased out every animal pretty much was getting very high exposure i'm no medical professional but seems like there has to be other ways to supplement calcium without eating ground up horse parts fifth year med student here diagnosed myself with lymphoma everyone thought i was being a classic paranoid med student but turns out i was right finished chemo two weeks ago not particularly rare but i had a guy diagnose himself with gillian barry syndrome and a lady diagnose herself with chocolate marie tooth disease i worked in a health department for a while looking at infectious diseases two things seemed constant one the vets are really good at self diagnosing zoonotic diseases two their doctors rarely believe them in my time we saw two uncommon diseases cytokinesis and tularemia vets are well trained anyway but to be fair it is a pretty obvious leap from my treated a dog with extero now i have x2 the psiticosis was from some exotic bird and had infected the owner the owner already had a cough when visiting the clinic and the vet recommended the owner see her gp but the gp refused to order the tests until the patient was extremely sick if i recall correctly the lady survived that a lawsuit came from the ordeal no idea how it ended bird survived too i believe a different vet herself got tularemia treating a stray cat that was brought into the clinic tbf it is very rare in cats the cat sadly died despite treatment the vet's gp was not convinced she could have contracted the disease so quickly the health department had to intervene and insist that the vet get treatment i honestly have no idea why anyone would flat out deny the possibility when a known exposure is present arrogance and a dismissive attitude mind-blowing i had a patient who correctly diagnosed herself with mastitis although she was very worried that she had inflammatory carcinoma of the breasts to be fair they can look similar another time i had a patient correctly diagnose a lump in her breast as a fibroadenoma i was very impressed after staying up all night convinced i also had breast cancer around 4 am i started chilling and had a fever and then realized lost nap this is mastitis went to her had mastitis i went into the ear in severe pain and was sure it was kidney stones i told the nurse that and got a long lecture how i do not self diagnose just tell the doctor my symptoms and let him figure it out because he's the professional doctor comes in i describe my symptoms leaving off my ideas on the matter and they do some blood and urine tests the doctor comes back and it turns out i had kidney stones i looked at the nurse who happened to be in the same room at the time and she just huffed and walked out doctor looks confused and i tell him the whole story he laughs and says something to the effect of of course patients should tell me what they think the issue is and why i may not come to the same conclusion as you but every bit of data helps some clinicians like it others don't most flabbertomists i've seen they're the ones that draw blood for a lab test like it when i tell them that i have difficult veins and where good spots are some have gone straight for it others have preferred to check other spots only once have i gotten a flabber to miss that told me not to tell people that that it makes their job harder i work in pain management and a lady had symptoms that other doctors didn't believe she was labeled a drug addict or someone seeking narcotics she came to our office in tears just telling me that she felt pain in random places of her body with no abnormal imaging or other symptoms but she stated several times that she felt she had something unexplainably wrong with her and that she wasn't lying for pills we discovered she has a very rare case of chronic regional pain syndrome more severe than any other case we have seen sadly there is no cure but at least she has an explanation as to why she has pain for no evident reason not a medical worker but i am a rare case of webmd being right about cancer felt a lump in my throat for upwards of a year and a half but doctors kept telling me it was in my head they stuck cameras down my throat and nothing it took an ultrasound after myself giving up and my pcp saying my thyroid felt slightly enlarged for a doctor to find it one ultrasound and a biasy later they found out i had stage 2 papillary thyroid cancer that metastasized to 18 lymph nodes myself with lupus been having issues with chest pain and a mirror are the symptoms that never made sense together gps don't want to look at the mountain of records they have for you just the problem at hand all tests for a diagnosis came back in normal parameters but i insisted on a fail safe i'd read about i asked to be tested for syphilis but you have no symptoms of that i know it's because lupus will show as a false positive on that test done and i have lupus i also diagnosed myself with lupus went to two doctors and they didn't believe me i was 16 and they claimed i had the teenage blues or it was anemia symptoms finally went to a third doctor when i couldn't go on feeling like crap any longer turns out i was in stage four kidney failure from lupus and they were like yeah you need to see a rheumatologist tomorrow pyloric stenosis a couple brought in their little one with exorcist type projectile vomiting examined ultrasound confirmed the diagnosis my older brother is developmentally disabled for the longest time all the psychologists and school counselors said he was adhd and had some learning disabilities that he may have obtained in utero my bad ass mom with only a high school diploma never really accepted that this was all that was going with him but listen to the doctors anyways fast forward to when my brother was 10 years old and my mom had read an article about fragile x syndrome she happened to read about a rare form of it called fraxy the article perfectly described my brother's condition my mom then decided to talk to a genetic counselor about getting my brother tested the genetic counselor kind of scoffed at her diagnosis but went along with it anyways lo and behold my brother had the exact form of fragile x she had read about my mom not only diagnosed my brother but also found that our family was a carrier for fraxie it turned out my mom was a carrier and my grandpa had fracks it was amazing because all of my grandpa's life he fought with feelings of inadequacy because school and learning new things were really hard for him he was held back three times in high school when he found out that there was a legitimate medical reason for this it completely changed his outlook we had a 20 year old patient come in the hospital because his girlfriend was laying on his chest and told him his heartbeat is a little fast and sounds weird he came in and said he has an irregular heartbeat arrhythmia according to his google research he said he may have a fib he was correct while watching a documentary about asperger's during class i had a potent and slow realization that what they talked about was disturbingly accurate on a personal level after running through some screenings months later cause diagnosis screenings are more focused on children than adults the doctors were wondering how it managed to be undetected during my childhood you were just odd not really a rare disease but when i worked in a district hospital i had a patient who came in for a three-day fever saying that she might have hepatitis a because she had some shellfish over the weekend she had no other symptoms i laughed it off her full blood count did seem to indicate a viral infection but i was thinking of dengue which is a very common thing in that area or just your run-of-the-mill viral fever fearing the former i scheduled her to come on saturday three days later to review her dengue antibodies test result it so happened that i was working half day that saturday it so happened the lady was yellow on that saturday jaundiced from the hepatitis and the igm came back negative boy was i humbled she was hospitalized in a tertiary center and came back for follow-up a few weeks after and she was fit as a horse i knew a guy who diagnosed himself with appendicitis within one and a half hours of the symptoms appearing oh it was very impressive for someone with no medical expertise i had a guy walk into the ed one night he was septic which was causing stress on his heart and was causing a heart attack he walked in and was dead within 90 minutes his last words to me were you're going to have to tube me as he slipped into flash pulmonary edema he was right the whole situation still haunts me whereas diseases are often easier to self-diagnose than medically diagnosed as the patient will jump to the worst conclusion with no data and the doctor will start at the most likely and test down from there when you hear hoof bits think horses not zebras i am self diagnosed with congenital mirror hand syndrome which less than one in one million people have it's kind of obvious because when i move one hand the fingers on the other hand move two i may have an extremely rare variant because i also have mirror movements within each hand and i can't find evidence of this in other people but basically when i move each finger the other fingers in the same all move in the opposite direction but so when i lift up a finger the others all go down and vice versa i thought this was normal until i asked my friend if she could wiggle her pointer finger without moving the others it blew my mind because it looked so weird to me i had a guy come in one night and diagnosed himself with a broken tibia wasn't as impressive as it sounds as it was sticking through his skin i mean i'm impressed his diagnosis wasn't a hirana i self-diagnosed myself with allergy to carrot anti-freeze protein for some years i after eating raw carrots or having fresh carrot juice from the fridge i was experiencing a tingling sensation in the throat and i could feel it swelling at some point i realized that i was allergic to carrots but only to the raw ones the weird thing was that this wasn't always the case i sometimes had raw carrots and had no symptoms at all the cooked ones were fine then about eight ten years ago i watched a program in which they mentioned that carrots can produce a natural and at the time only plant anti-freeze protein carrots make it in response to excessive cold they also said that some people may be allergic to it this protein is also broken down while carrot is cooked this struck me as that's it so i did some tests i can happily eat raw carrots that have been pulled out of the ground with no symptoms however raw carrots that have been in the fridge for some time will give me narrowed and achy throat patient was having clear fluid drip from her nose and headaches she was convinced she had a csf leak fluid surrounding brain hot dang if she wasn't right rare mitochondrial disorder mother is a researcher investigating this particular extremely rare gene in a neurological laboratory while her child is growing up he developmentally regresses mother believes that the constellation of symptoms fit the genetic disorder she is researching they do whole exome sequencing and the child turns out to have this rare disorder the mother is one of the few in the world to be doing research in made ambiguous for sake of confidentiality her not that confidential the new york times just did a write up on it i diagnosed myself with a condition called hydranitis superratafa i've struggled with it for 25 years been to several doctors who just threw a two-week antibiotic at me and told me to come back if it returned when i asked why i was having these flare-ups they usually just shrugged and said i was just one of those people who were prone i was never given a diagnosis i started really looking into it about a year ago and went to a new doctor where i explained in detail why i believed i had the condition after examining me she agreed and has been wonderful in helping me treat this with practical remedies and an open mind and listening ear so glad to have found her when i did theater in college there was a guy who was a fifth year physical therapy major we had a huge physical therapy program at the college i attended and he was going for his doctorate he fell of the stage during rehearsal and broke his leg really gruesome fall his leg was clearly messed up and he was yelling out in pain and there was a lot of blood but when the paramedics arrived he started telling them exactly which parts of his leg were damaged or broken between his shrieks of pain our director said everything he told them was correct when they checked it out at the hospital who else here is familiar with what i like to call patronize the crazy woman test package 1 cbc 2 drug test 3 pregnancy test 4 discharge home with anxiety diagnosis i went through this for 14 months with my doctor till i got a second opinion and found out i had metastatic cancer good news is by the time i received the dx he had cranked up my anxiety meds dosage so high it wasn't even that distressing not a medical worker but an ex-roommate has three girls one the four-year-old he would sway held her breath till she passed out when she got mad one morning while watching them all she did was get angry and boom hit the floor eyes rolled back in her head i knew it from the start off the top of my head it was cataplexy any sudden burst of emotion and this kid would hit the floor i sat the dad down and told him he has got to take this kid to a neurologist diagnosis made two weeks later i watched a medical documentary on it when i was 13 and actually remembered something basically half the patients i talked to tell me they have some random rare disease more than once though rarely they have been right if i had a gold medal to give out would be for this 70 yo male that came in as per family members he's been sick ex three days cough runny nose low fever next 12 hours family members explain he is never sick and he must have tuberculosis he tells me he probably has a cold but came so family would stop worrying he was right not a disease but i once thought my pelvis was broken so i got an x-ray and the doc said it wasn't but i wasn't buying it got a second opinion and sure enough broken pelvis if someone can stab you in the back while smiling in your face you have a broken pelvis not rare but i self-diagnosed a psychotic episode i was then told that self-diagnosing a psychotic episode was impossible and placed on an antipsychotic because i was correct i had a nagging suspicion that my husband had thyroid cancer based on how his shirt collar was sitting at our friend's wedding last year he was driving and i was sitting in the back and it just looked off and my heart sank our doc dismissed it but sent him for an ultrasound at our insistence thyroid cancer is not rare but i wasn't wrong i guess when you've been staring at someone neck for a decade wife of the year candidate right here i diagnosed myself with trigeminal neuralgia but it took me years to find a doctor that would even consider checking it i was told over and over again it was my teeth my dentists various over the year said it wasn't because the pain was not a constant but had horrific flare up it was hard to prove and various doctors assumed i was seeking painkillers at times the pain was so bad i hit my head against the wall in my bedroom to knock myself out not as easy as it sounds eventually i would have a bottle of vodka and stand by and start drinking till i passed out if i came round when it was still ongoing i'd drink some more eventually two years ago a new doctor joined the practice and having seen me she read through a year's worth of notes and to my utter surprise told me that she agreed now i am on painkillers hydrocodone and pregabalin pregabalin is a godsend i wouldn't wish that kind of pain on anyone i stopped leaving the house and became completely agoraphobic as i had become terrified of being in public when a flare-up happened i am so so grateful to my doctor for believing me and making it bearable my mom's friend is this get yourself a good support group you are not alone i correctly diagnosed myself with an ectopic pregnancy about eight years ago if it weren't for google i may not even be alive today not a medical professional but this happened to a friend of mine he traveled in africa came back to the states and was looking in the mirror one morning sometime after when he saw a worm swim across his eye having heard of african eyeworm he went straight to the doctor who put him in the psych ward without even examining him several days later he was diagnosed as a completely sane man with african eyeworm frick you doc i wish i have what my immunologist calls a case of we don't have a name for everything i've googled many times with my lab results and nothing matches oh well if you are new to the channel you can subscribe i publish new videos every day until then check another video [Music] bye for now

Channel: Updoot Studios

Views: 121,185

Keywords: doctors, rare diseases, rare diseases in the world, self diagnose, doctor stories, hospital, #updootst, updoot, updoot reddit, updoot everything, reddit on tap, toadfilms, pewdiepie, reddit, askreddit, funny reddit, reddit stories, top posts, reddit top posts, reddit cringe, comedy, reddit compilation, /r, r/, r/askreddit, top posts of r/, askreddit reading, best reddit posts, top posts of all time, people of reddit, askreddit question, ask reddit, subreddit, sub, reddit stories 2021

Id: KYbLhJ4jdp4

Length: 25min 8sec (1508 seconds)

Published: Thu Aug 19 2021