48 Stories Of People Who Self-Diagnosed Accurately And Surprised Even Their Doctors

A friend of mine who’s a journalist was interviewing a doctor about celiac disease when she realized she had all the symptoms.
She went to her GP to confirm and yes, she has celiac disease.

I was the self diagnosing patient, not the doctor.

I went to the doctor complaining of being very tired when in my mid 30s, got sent to the lab to get blood tests taken and sent home. No reason found. Went back a couple weeks later complaining that I was still unusually tired, and that I'd coughed once and that coughed something up that looked like what I was coughing up a lot of when I had pneumonia when I was 12. No, I wasn't coughing generally. No coughing, no fever, no shortness of breath, my O2 levels were fine... But I thought I had pneumonia! The doctor looked at me - and I remember this quote EXACTLY - and said, "Well, I DON'T think you have pneumonia. But out of an ABUNDANCE OF CAUTION I will send you to get x-rays taken." Went downstairs to the imaging lab, waiting an hour, got my x-rays, went home. Got a call the next day. "Hey, guess what!? You have PNEUMONIA!" Atypical walking pneumonia, yup.

A few years later, my dad got what we think was covid (before tests were available), and tho he recovered for a bit he then declined again. I told him I thought he had pneumonia, that I had atypical symptoms, that everyone always said we were so similar that maybe that included the immune system and that he should go to his doctor and ask to be checked for it. He wasn't coughing either. I'll never know if he went to the doctor or not. He was found unresponsive about a week later and spent 3 weeks in a medically induced coma, never fully woke up/spoke again. Doctor given "cause of death" was sepsis caused by 2 different types of pneumonia bacteria in his lungs.

Not a doctor or nurse, but I self-diagnosed my diabetes by noticing a weird thing and Googling it.

I noticed an influx of ants were attracted to the areas around the toilet in my bathroom. I didn't think much of it other than trying to figure out where the hell they were coming from.

After a few weeks of this continuing I Googled "ants attracted to toilet" and one of the results was excess sugar in urine and mention of diabetes. Since I was pretty much the only one that used that bathroom I made a doctor's appointment to get it checked and sure enough I was diabetic.

Once my A1C was in line the ants were no longer a problem. It sucked to be diagnosed with diabetes, but I am thankful it was caught and now I have a story to tell.

I'm not a doctor or a nurse, but I've got one.

My younger brother dealt with persistent chronic ear infections and was supposedly diagnosed with eczema in his ears. They would often weep pus that smelled foul and he would swab them every day. They were red and flaky inside, which prompted the eczema diagnosis, but I don't think explained the pus?

So after 10 years of dealing with this, he gets fed up with it and decides to send off 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 was able to receive a now family famous prescription for his vaginal yeast infection, which cleared up his problem within 3 days.

I've diagnosed myself with many things and gone to the doctor about it.

The only thing I ever got right was OCD, which explained why I diagnosed myself so many times before...

I’ve got a double whammy: I am in healthcare and recognized my own bipolar disorder and PTSD. Went and got evaluated, four psych diagnoses later, and here we are lol.

My husband and I were at a show with no phones allowed and when we got out, we had like 20 missed calls from my parents who were babysitting our then five-month-old baby. She had started projectile vomiting then went into shock, barely breathing and a really weak pulse. By the time we got back to her, she was starting to feel better, but I did some research that evening and figured out she had Food Protein-Induced Intercollitis Syndrome, which made the next few years really awful. My husband is a doctor now but wasn’t even in med school yet at that point, but as he got more training we realized how lucky we are that she survived.

My father noticed an unusual pattern in his CBC (complete blood count) labs over a period of 5 years, so he did a little online research. Made an appointment with his doctor at Kaiser and told them he thought he had leukemia. They told him no, there's no way you have it. So he got a second opinion at an academic teaching/research hospital and wouldn't you know it, it was leukemia, CLL. At the time there wasn't a cure, but he did a bunch of research, got himself into some clinical trials, and he's been in remission for 8 years now.

I diagnosed my mother’s PEs (pulmonary embolisms). She’d had abdominal surgery the week prior and made an off the cuff remark about having to sleep upright as she was short of breath when lying down. That didn’t sit right with me so a quick google told me about how PEs can happen, especially after major abdo surgery. Told her to get to emerg, STAT—sure enough, 3 PEs. She’s fine now, thankfully, but she sure as hell could’ve had a stroke if she hadn’t have mentioned anything.

Not a medical professional but I was also carer once for the elderly and disabled. I had a client who was in his late 40s and had Multiple System Astrophy (MSA).

He had been perfectly healthy his whole life. Had been a police officer for many years before working in Children's services and had 3 teenage daughters.

So why did he go to the doctors? He had been playing Squash with his brother and lost a game. He had never ever lost a game of squash to his brother and they were both shocked. He got checked shortly after and was diagnosed with MSA.

Within a few years he was losing his mobility and was having difficulty with concentrating. He would have absent seizures and continence issues. Eventually, he lost all mobility and had breathing difficulties. He passed away around the age of 50.

One of the loveliest blokes I ever met. His wife was wonderful too. Broke my heart to know he would never see his daughters graduate uni or get married. They loved him so much.

I still think about them sometimes and really hope they are doing okay.

I don't know if it's "impressive" but my oldest child spent years with cyclic vomiting syndrome before I finally went to Dr. Google and figured it out. He was getting sick and vomiting about once a month for a while and my husband at the time had a job that was really flexible with him taking time off for kids so we didn't think too much about it. The first few times we really just thought it must be something he ate or had a stomach bug or something. Then one month when he was around 5 or 6 it happened 3 times in the month and I thought, "this can't be normal. It's clearly not a contagious thing because no one else in the house ever gets sick when he does" It was also getting to a point where calling out of work was getting excessive, but we also knew we couldn't send him to daycare/school when he was puking so much.

The hardest part was figuring out what to type to get to the end diagnosis. Most results just kept being warnings of when to take your kid to the doctor/ER after too long of vomiting, not what to do/what it is if the vomiting is occuring very frequently.

I am a medical professional, but that's kind of irrelevant because I was still in college at the time. One day I woke up and felt a lump under my chin in my neck and had a hell of a sore throat. I go look in the mirror and its about the size of a golf ball. After consulting doctor google I figured I had an infection in one of my salivary glands. My mom picked me up to take me to the hospital, they took one look at me and admitted me right away because they were concerned it if got any bigger it would cut off my airway. After some tests and imaging guess what I had? An infection in one of my salivary glands. Doctor said this was relatively rare because healthy people just don't get those very often. However, I also have Crohn's disease and was taking immunosuppressants for that, which brought my immune system down just enough for something like this.

My sister has a chronic illness and was constantly sick and in the hospital a lot when we were children. It was traumatizing. After a few years of hospitalizations and several doctors that couldn’t figure out what was causing the intense migraines that debilitated her, my mother’s several Google searches led her to finding Idiopathic Intracranial Hypertension (pseudotumor cerebri). Doctors wouldn’t diagnose her for a while with it even after mom insisted this was it because it’s most common in obese women that are 20-45 y/o and she was of a healthy weight and under 15 y/o. She’s since had many surgeries in her brain and spine in which a shunt was implanted each time to drain the fluid from her skull and she’s now on the right medications at 32y/o, but my mom’s googling and her persistence is what ultimately ended in her receiving the correct diagnosis, finally.

I had a guy come in who said, "I think I have diabetes. I have a shop out back with no bathroom, so whenever I take a pee break I just pee on the ground. Every time I take a pee the bees all come and land on it".
He was right.

….way back when, after baby #2, I started gaining weight, felt like I had been run over by a truck (!), and couldn’t remember basic words like chair/table. I made an appt. with my OBGYN, ‘you’re depressed’ even though I denied feeling depressed, end of consult. A week or 2 later, I remembered I had a family history of low thyroid (not that it’s necessarily familial) and made another appointment- oh!! My heart rate was 28! No wonder my mentation was garbage! I basically had no thyroid function- these days I can’t imagine having a doc appt. where vital signs weren’t checked- years later became ICU RN….

Not a medical professional, but one of my aunts was born in the 1930s and became a registered dietician. She self-diagnosed as having celiac's in the early 1960s, which was almost unheard-of at that time. .

Not me but I had a friend who had this with...porphyria.

We just used to call him 'the vampire' because of the symptoms. Then he noted it matched for porphyria, but hey, that's rare, so surely not...

Welp, he had that experience where the diagnosing professional says 'Hang on, do you mind if I bring a bunch of students in...'.

Not a medical professional, but 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. 4 years in remission and I'm doing great now.

Had I girl come in my consultory saying "Doc, I've been having this sores in my mouth for quite a while now and they come and go and well, I've been reading online and uhmm I think I have syphilis"


Checked her mouth, she had nothing, and I told her that primary syphilitic lesions didn't usually reappear but still ran the labs because syphilis is known for having unusual manifestations


Next time she shows up, saying "Uhmm doc I got my results and... I have syphilis". She did.

My mom was acting insane...I had to call 911. I told the ER to test her for an UTI. I was right!