Doctors And Patients Are Revealing When A “Self-Diagnosis” Actually Turned Out To Be True, And It’s A Reminder To Listen To Your Body

I think most of us have a story where we’ve felt dismissed by a medical professional. I can think of a handful of times from my own experience with doctors where I’ve felt like I haven’t been listened to, or where what they were telling me just wasn’t lining up with how my body felt — and it’s important to listen to those feelings.

Yes, we live in the age of WebMD, and it’s easy to get carried away (not every symptom is a sign of certain death, LOL), but sometimes your self-diagnosis can be right! Recently, Reddit user PumpkinAino asked, “Reddit Doctors and Nurses: What’s the most impressive case of Google ‘self-diagnosis’ that turned out to be true?” There were almost 8,000 responses, and while mostly non-medical professionals weighed in, there are so many personal stories where the patient was right and the doctors were wrong. Here are just a few.

Note: None of this is direct medical advice. Listen to your body, listen to your doctor, and if you think your doctor is wrong, get a second, third, or fourth opinion. 

1. “I went to the doctor, and in a condescending manner, he asked what ‘Dr. Google’ said I have. I told him that my symptoms matched up with multiple sclerosis. Two years later, I visited him again, and he had a resident shadowing him. She was the one who performed a test on me (Babinski reflex) that indicated neurological damage, which led to my diagnosis of… multiple sclerosis.”

—u/WhyYesOtherBarry

2. “I suspected I developed cholestasis of pregnancy while pregnant with my second child. How I figured it out is kind of a miracle. I followed a woman on IG who became pregnant and lost her child within 36 hours after birth, with no real cause. Five or so years later, she became pregnant again and was closely sharing her experience, as a lot of her account focused on her grief and healing after losing her first child. She started feeling itchy on her hands, arms, and feet, and realized she had felt the same symptoms with her first pregnancy, but dismissed them.”

“This time she went to her doctor, pressed for testing, and eventually was diagnosed with cholestasis of pregnancy, which can have adverse effects on the fetus (including stillbirth and fetal death). Connecting the dots, she realized that she had had this with her first pregnancy and was highly likely the cause of her first child’s passing.

At 36 weeks, I started feeling itchy hands and feet. I lotioned, ignored it, but it kept getting worse. I kept thinking of the IG lady, though, and I decided to go to my doctor. She thankfully said, ‘Let’s test your liver just to check.’ Turns out I had cholestasis of pregnancy, and likely saved my baby’s life by not waiting. I was induced two days later, and my daughter had no adverse effects.”

—u/saltandvinegar935

Related: “Girls Would ‘Disappear’ For A Long Time”: 18 Boomers And Gen X’ers Are Sharing Common Parts Of Their High School Experience That Are Unthinkable Today

3. “For years, I had horrible periods and got the whole ‘could be endo, could be fibroids’ runaround. But I also couldn’t use tampons — I would somehow just bleed past them, which made less than no sense, and my period cycle was so off sometimes I swore it was like I had two uteruses. Then one day, I was listening to a podcast where a woman talked about her experience of living with two uteruses. And I was like ‘damn, that’s me.’ I told my GP, she reluctantly sent me for the scans, and told me it almost certainly wasn’t that, given the rarity. But yep, turns out I have two uteruses, cervixes, and vaginas, and one unit of a kidney instead of the factory-issue two. Also, my mum thought I was crazy and jokingly bet me a car I didn’t have two uteruses. Still chasing her up on that.”

—u/HowAboutBiteMe

4. “I didn’t have any dramatic symptoms other than poor appetite and fatigue, but I knew I had something going on above my waist, but not in my chest. Doctors blew me off, so I got a lung scan due to my smoking history. Turns out I have kidney cancer. The tumor was on the upper, outside part of the kidney. I had a partial nephrectomy, and my third post-surgery scan is coming up. “

—u/dark_places

5. “I self-diagnosed as having West Nile virus after reading a news article about it and realizing all my symptoms matched. The first doctor I went to made light of my symptoms, gave me some vitamin C, and told me to eat more bacon. 😑 I went to another GP and was taken more seriously, sent for blood tests, and they came up positive. I took about two and a half months to recover.”

—u/Mou_aresei

6. “Over the years, my 75-year-old father began losing mobility and was basically descending into dementia. He was barely shuffling around, constantly dizzy, and had strange problems feeling what his body was doing. His short-term memory was reduced to minutes at one point, repeating the same sentences again and again in response to his visual stimulation. After seeing many doctors, he was diagnosed with Parkinson’s disease and dementia. He went a year without leaving his chair except for basic functions. Hope was fading fast as his deterioration seemed to be compounding. He called me one day, saying he had read an article about normal pressure hydrocephalus. I did some research and agreed with him strongly.”

“Everything seemed to click. I found a specialist and drove overnight with my father for him to get seen. He was diagnosed with normal pressure hydrocephalus and had two brain shunts over the next six months to relieve the pressure on his brain. We got my dad back. Memory and mobility improved to 80% back to normal. He was gone, and Google-diagnosed himself out of it while in the last depths of what appeared to be dementia.”

—u/AmbitionFew9945

7. “I diagnosed my own bipolar 1 disorder after years of misdiagnoses. Psychiatrists and therapists said I had depression, anxiety, ADHD, etc., etc., but nobody ever suspected bipolar, even when I was having obvious, full-blown manic episodes. Before I figured it out, nobody ever took me seriously and just called me ‘energetic’ and ‘quirky’. SMH. I’m four years in remission and I’m doing great.”

—u/rainbow_osprey

Related: 24 Very, Very, Very, Very Disturbing Facts That Are Seriously So Intense, I’m 99% Sure They’re About To Break Your Brain

8. “I once went to the doctor with every symptom of oral thrush and told them it’s what I suspected I had since I use an inhaler, nasal spray, and a retainer. Their diagnosis was the significantly less likely, Burning Mouth Syndrome, saying they hadn’t seen an adult with oral thrush before. I didn’t want to make it worse with the antibiotics they prescribed, so I got a second opinion and some anti-fungal mouthwash. It cleared up quickly. Same year, I also had chronic ear infections, both bacterial and fungal, and a doctor friend said, ‘Oral thrush and chronic ear infections? What are you, three years old?’ My adult sister got hand-foot-mouth disease around the same time, lol.”

—u/FunTransportation869

9. “I looked a doctor dead in his eyes once and said, ‘Listen, I know my body. You don’t know my body. Right now, my body is doing something weird that it’s never done before. Please run the test.’ He refused. I went to a different doctor. They ran the test. I was treated. I am fine now. Oh, the wild off-the-wall inconvenient test I wanted to run? A Pap Smear. ‘But it’s only been eight months since your last one.’ I had been given the gift of an aggressive strain of HPV that went 0-60 in those eight months, and I needed a LEEP. I felt off, I felt wrong, I know my body. Sure, there are hypochondriacs in the world, but why let people who are searching for answers suffer because of the off-chance they’re a hypochondriac?”

—u/feeen1ks

10. “My uncle was 100% convinced his baby daughter had pneumonia. She wasn’t coughing, but had a wheeze that was so faint the doctor couldn’t HEAR it and actually called in his nurse to listen — and thank heaven he did. I’ve met doctors who would’ve just gone with their own judgment, especially when my little cousin wasn’t showing any symptoms other than her lips being dark. X-rays showed she had a LOT of pneumonia, on both sides. Her blood oxygen was scary low, but no one checked that until AFTER the X-ray for? Reasons? She’s a healthy teenager now.”

—u/CenturyEggsAndRice

11. “I had to self-diagnose our firstborn with craniosynostosis. When he was born, his forehead looked off to me, but our pediatrician brushed it off, saying it was just from a hard birth and it would improve as he grew. I felt in my gut that was wrong and spent dozens of hours googling before finally hitting on the magic word: craniosynostosis. At his three-month checkup, I told the pediatrician I was concerned that’s what it was, and she still brushed it off but gave a referral to the Children’s Hospital. The craniofacial nurse was only three steps through the door before she stopped and was like, ‘That’s coronal synostosis. Let me get a doctor to discuss surgery options.'”

—u/ConstantScholar

Related: “We Did This Man No Favours By Saving His Life”: Medical Professionals Are Revealing Their Most Stomach-Dropping Patient Stories, And It’s So Intense

12. “I was in severe pain two days after working out. When I say severe, I mean any twitch of my thighs made me want to cry. I could barely move my arms, sitting down was horrendous, and I was on the verge of asking my now-wife to help with using the bathroom. I went to the bathroom and noticed my urine looked like cherry cola. I talked to my former paramedic boss, told her what I was experiencing, and that I was concerned I had Rhabdomyolysis. She agreed and told me to head to the ER. I walked myself across the street to the ER and told the PA the story, and told her I was worried about Rhabdo. She dismissed me, saying it was unlikely, but she’d run some basic labs anyway to rule it out.”

“Two hours later, she comes back with a nurse carrying two bags of saline and tells me that my CK levels are so high the lab is having to do serial dilutions to quantify the results, which is why it’s taking so long. They hooked me up to both bags of saline, and within 30 minutes, I was getting a third. I spent four days in the hospital, I almost needed dialysis, and when I got out, I couldn’t even dress myself. My arms were so swollen you couldn’t see my elbows.”

—u/oosirnaym

13. “I told my GYN that I might have endometriosis because I took a test in Cosmopolitan magazine, and I had the symptoms (this was the early ’90s, so no internet yet). She said I was being ridiculous. A few years later, she did my hysterectomy, where I lost one ovary because it was glued to my bowels with endometriosis. About four months later, I started having extreme pain in my abdomen, and she tried to refer me to a gastroenterologist, but I knew from the AOL Hysterectomy Board, it was adhesions related to the hysterectomy. It took seven or eight months before she would check it out with laparoscopic surgery, and I had to live with the pain. She woke me up after surgery, yelling, ‘You knew! You knew!’ She hadn’t believed I had adhesions because I had pain in all different areas of my abdomen. Turned out I had adhesions in all different areas of my abdomen.”

—u/Risheil

14. “Not a medical professional, but I diagnosed my own skin cancer, despite being dismissed and told it was just a pimple. Luckily, it was slow growing, and I’m fine now, but my dermatologist tells her residents about my story when I go for check-ups. “

—u/AffectionateFox1861

15. “My younger brother dealt with chronic ear infections and was diagnosed with eczema in his ears. They would often weep pus that smelled foul, and he would swab them every day. His ears were red and flaky inside, which prompted the eczema diagnosis, but I don’t think it explained the pus. So after 10 years of dealing with this, he got fed up with it and decided to send samples of his own for private testing so he could review every single bacteria that was present himself. Turns out, the biggest colony was Candida. He received a prescription for an ointment used to treat vaginal yeast infections (a now-famous story in our family), which cleared his problem up within three days.”

—u/xenogazer

16. “I was a triage nurse in an emergency department. This 30-year-old came in at 3 a.m. complaining of a dull, low-grade pain in his left shoulder. He said it ‘felt like nothing’ but googled the symptom and saw shoulder pain on the list for heart attacks. I did an ECG on him, and it looked overall unremarkable, but I had the subconscious feeling I needed to put him in a room. Turned out his troponin was greater than 10,000. Big ol’ heart attack.”

—u/Flimsy-Glove-6178

17. “I was feeling off, and had to see a doctor I wasn’t used to. He kept saying, ‘It’s dehydration, take some electrolytes,’ and I kept saying, ‘No, I’ve been assuming it was dehydration for almost a week now, and home-treating, but it’s getting worse, not better.’ I just argued and refused to leave the doctor’s room. Eventually, he gave in and ordered a blood test, probably just to get rid of me. Two days later, my regular doctor phoned with the test results to say, ‘Pack a bag, and get to the hospital, you have complete kidney failure.’ A couple of hours in an ambulance, plus a further four days in the city hospital, and they finally found the diagnosis: a one in a million auto-immune condition.”

—u/Kementarii

Related: “20 Years Later And No One In My Life Has A Clue Except Me”: People Are Anonymously Revealing A Secret They’ll Take To The Grave, And I Wasn’t Expecting Thiiiiiiissssssssss

18. “When I was in high school, one of my science classes had us do a research project on systemic diseases. My friend chose diabetes. They noticed the symptoms matched what they had been feeling lately. Went to the hospital, and it turned out they were days to hours from a diabetic coma. I think it’s a miracle it went undetected for so long, but then again, I don’t know much about diabetes. They are now a medical professional, so this story really came full circle.”

—u/amurderofcrows

19. “It started with pressure headaches, then I got up one morning and walked sideways into my bedroom wall. My general practitioner diagnosed me with Labyrinthitis and prescribed medication for nausea. The headaches got more frequent along with spells of the most intense vertigo I’d ever had. Two years of being told ‘it’s just anxiety’ from three different GPs. I started getting ringing in my ears, and sometimes my hearing would become muffled for short periods of time, like I was underwater. I was reading everything I could find relating to my symptoms, and absolutely everything pointed towards Ménière’s disease. Still, ‘it’s anxiety.’ My GP actually laughed and called me Doctor Google.”

“Eventually, I ended up at an after-hours clinic one night because my vertigo was so bad, and I’d completely lost my hearing in one ear. This led to a referral for an MRI and eventual diagnosis of… Ménière’s disease. Signed, Doctor Google, MD.”

—u/MediumPeteWrigley

20. “After an egg retrieval, I took myself to the ER and told them I definitely had a severe case of ovarian hyperstimulation syndrome. I thought it was a no-brainer. Boston IVF had warned me of what to look for, and I had nearly every symptom, including the ‘go immediately to the ER’ ones. The ER doctor kind of laughs and goes, ‘Maybe we should avoid googling symptoms.’ He recommended Tylenol and was going to discharge me! It took me forever to convince them to just do imaging and check my ovaries. First time I’ve ever heard a doctor say, ‘Holy shit, that can’t be right.’ My ovaries were each larger than a grapefruit. They called the on-call OBGYN, who admitted me immediately. Per my OB, I’m the only person at my (tiny) hospital who has ever had to be admitted for severe OHSS.”

—u/EvilAbed57

21. And finally, “Not a specific instance, but if someone looks you dead in the eye and says they’re going to die, you should believe them. Happened more than once when I was an EMT.”

—u/cawise89

Have you ever self-diagnosed a condition that a doctor tried to dismiss? Tell me about it in the comments or leave an anonymous comment using the form below. Your response may be featured in an upcoming BuzzFeed article!

Note: Responses have been edited for length/clarity.

Also in Internet Finds: “I Was Dumbfounded That He Lived His Life Thinking That”: 19 Adults Are Sharing The Most Unfathomable Things They’ve Ever Had To Explain To Another Grown Up

Also in Internet Finds: My Eye Is Slightly Twitching After Looking At These 21 Photos Of People’s Inconsiderate, Incompetent, And Downright Inappropriate Coworkers’ Behavior

Also in Internet Finds: People Who Work At Sea Are Revealing The Creepiest And Most Inexplicable Things They’ve Ever Witnessed, And I Now Have A New Fear Of The Ocean

Read it on BuzzFeed.com