You're not supposed to self-diagnose and leave it to the experts, but the truth is, those experts are human too. It turns out googling your symptoms and listening to your body might be what saves you from taking an extra trip to the hospital, and even death.
(Content has been edited for clarity.)
"My dad, who is a great person but also occasionally a prick, took my 3-year-old sister to the ER with the flu.
Thing is, there was a meningitis outbreak in the area, and the ER was packed. My dad, being a prick, told the nurse he suspected meningitis to bump us to the top of the list.
The doctor was ticked off because my sister didn't have any meningitis symptoms - no stiff neck, no fever. They get into an argument. The doctor finally ordered a spinal tap 'since her dad is concerned.'
My dad would not back down at this point.
The results came back positive for meningitis."
"When I was 25 years old, my family and I were planning on going on a snow vacation in then Czechoslovakia. I woke up with a 'weird' feeling in my stomach, no pain, but I could tell something was off. I went to my doctor, he felt around a bit, found nothing, and wanted to send me home. I refused and got a referral to the hospital (this was still all only because of my gut feeling). I had bloodwork done, and all tests came back negative. The surgeon eventually came by, and we had a chat. Based on my words alone (not the results), he scheduled me for a laparoscopy to remove my appendix, stating, 'It will have to come out at one point, might as well do it early.'
I went under and woke up with a 15cm scar on my belly. My appendix was heavily inflamed and about to burst when they went in. Because I had no pain from it, I would likely only have found out my appendix burst on top of a snowy mountain, nowhere near any doctors, where my stomach would have gone septic. There was a good chance I would have died.
The surgeon couldn't stop talking about how I probably saved my own life by being so adamant something was wrong."
"A guy was out mowing and his toddler was close by. The kid suddenly started screaming, and when dad went to calm the kid, he noticed he had a tiny little nick on his back. He took him to the local doctor who said it was probably just a rock thrown up by the mower that scraped the skin because the kid seemed pretty calm and not too sore.
The guy thought it was something more, and so he brought the kid to our larger hospital, and when we ran an abdominal X-ray, there was a 10cm segment of metal wire embedded in the kids back. We then ran a CT scan and the wire ran parallel to the abdominal cavity and going through one of the kidneys and just nicked the largest vein in the body.
Hard to say how bad it would have been if it was missed for much longer. If the wire shifted, he may have bled to death, but given it was a wire that had been outside for awhile, he may have ended up septic."
"It took me four years to get a sleep disorder diagnosed (Delayed Sleep Phase Disorder).
I started being unable to sleep early and wake on time. I went through a million insomnia diagnoses and every management therapy possible. No improvement. I ask doctors if it could be a sleep disorder. Not possible - 'too rare, don't exist, your fault,' and so on.
I start checking out different sleep disorders. Based on my management therapies and symptoms list, I start ruling them out one by one. Researching your own murky disorder was a stupid idea, I knew. But hey, if not a single doctor has been willing to take your case further, what are you to do?
Severe untreated DSPD can make it hard or impossible to study, work or have a social life at all. Life is at stake here.
I come to the conclusion that it might be DSPD. Not trying to push anything. I've got a symptom history and a detailed sleep diary of over 24 months by this point.
Five doctors in the UK all tell me, 'You don't know what you're talking about. Go to bed on time.'
A sixth doctor begrudgingly allows me to see a sleep specialist in Oxford.
The sleep specialist takes one look at my sleep history, symptom history, and survey results. She curses the five previous doctors for being proud idiots and not allowing me to make an appointment with her earlier. She then diagnoses me with DSPD within a single month of testing."
"An old roommate and friend of mine had a severely sore throat to the point that she was crying from the intensity of the pain. This is a girl with a crazy high pain tolerance - I was with her when she broke her leg, and the most she did after the adrenaline wore off was mutter, 'Dang this sucks,' while hobbling to the car on just some strong ibuprofen. But watching her cry and whimper while barely able to talk, swallow food, or breathe was enough for me to take her to urgent care. If the pain is that bad, something is definitely wrong.
While I figured it was either a bad case of strep or tonsillitis, the freaking doctor told her it was just GERD and prescribed her medicine for acid reflux. We headed home frustrated but she was trying to convince herself that was all she had. I Googled her symptoms and everything was pointing to Strep.
The next day, she was even worse. I took her to the ER this time because I was scared she would suffocate on her own swollen tonsils and I could see her glands were swollen under her jaw.
Finally, she got a swab test, and she came out of the doctor's office a few hours later with this HORRIFIED look on her face.
Poor baby not only had a monstrous case of Streptococcus infection, her boyfriend also gave her gonorrhea in her mouth and throat.
After a strong round of antibiotics, she was back to her old self and happily single."
"I had a patient who predicted her own death. She was a relatively healthy 90-year-old with hypertension and diabetes. She woke up that morning and told her daughter that she was going to die. She made her daughter go to a lawyer's office and sign a living will, confirming DNR/DNI. That evening she had a massive heart attack and was rushed to the ER. We tried medical management, but per the living will that she signed like six hours earlier, she did not want any invasive measures taken. She died about an hour after she came in."
"I had a patient at the ICU on a ventilator because of rapid lung fibrosis. Usually, it's triggered by medication or an outside trigger.
We stopped one of his cardiac medications, which is known for being able to cause this kind of syndrome and the progression of his disease stopped. We told his wife, and she said, 'Yeah, I knew, and I knew it was this particular prescription. The dog told me.'
We were shocked and asked her to explain. She confessed she had been feeding her husband's different prescriptions to the dog over a period of two weeks (every day a different prescription), and he started barking when she fed him this particular medication.
Really, she was just crazy and it was a coincidence.
My superior jokingly said: Maybe we have to let him go before she kills that poor dog with some other absurd experiment."
"I had a patient come into one of my urgent care offices with a lump in her hand. She was in a car accident seven years ago and apparently had glass in her hand that was never removed. She just lived with it for seven years. She said she had seen multiple physicians including a dermatologist, and they all told her that she was crazy.
I thought she was crazy as well, but I had a student with me, and I figured, 'Oh well, let's open this lump up and see what we find.' Normally I would not do this, but this patient was essentially begging me with tears in her eyes since no one believed her. At worst, I figured I'd remove a cyst or lipoma. Sure enough, I made a small incision and squeezed, and out pops a 3mm piece of glass. She just stared at me, and I stared at her and I closed her up. She wrote a very kind review on our website."
"For years, I told my internal medicine doctor I had Hashimoto Thyroid Disease. I had all the symptoms, including the weird ones like hiccups, but nothing registered on blood tests. She basically called me an idiot and diagnosed me as bipolar. This went on for 10 years, and the bipolar medicine made me suicidal.
I finally got old enough to realize I could tell her to go away and find an endocrinologist. He took an ultrasound of my thyroid and it was almost completely dead. I had to get a biopsy to make sure I didn't have cancer. Years later, I'm still dealing with it since there really isn't a way to treat all the symptoms. Medicine helps, though. The bipolar medicine is out of my system, and that's probably the greatest win. My mental health has vastly improved!
Last year, my mother ran into my internal medicine doctor, and she apologized to my mother. The doctor didn't believe Hashimotos was a real autoimmune disease until she was also diagnosed with it."
"I was a 14-year-old slightly overweight girl who told multiple doctors over multiple years that my legs hurt like I had been running a lot. They told me it was because I wasn't fit enough. Then when I pointed out I was working on a horse farm and it was still happening, they said it was shin splints. Never mind that no one actually examined my leg or sent me for X-rays. Finally, it got to the point where I couldn't walk without pain, not even ten minutes to class, and longer distances had me crying and threatening to stab my leg with a pair of scissors.
The doctor finally referred me to a podiatrist, who asked me what the pain felt like. I told him 'It feels like my shin bone is in one of those vices they use in woodwork class and my legs feel heavy all the time.' It took him five seconds to refer me to a sports doctor, who confirmed that it was Chronic Exertional Compartment Syndrome, and it needed surgery rather than management because it was bad.
Here's the kicker - the exam for CECS involves getting a needle stuck into your leg to measure pressure, once at rest and then once after you've exercised to flare the condition up. After reading my result at rest, the sports doctor cut the second part out of the exam and warned me not to flare the condition up until I'd had it operated on. While CECS is not usually a medical emergency, if you push through the pain once it's into 'while you walk' territory, you can turn it into acute Compartment Syndrome, which is a surgical emergency. The doctors who had been telling me I wasn't fit enough? They were telling me to push through the pain and get over it. The doctor who ended up assisting on the operation on my legs five years later was the doctor who told me I was just unfit."
"I had arthroscopic knee surgery on a Wednesday morning. I felt great Thursday, and then I woke up Friday and had a little tightness in my chest but attributed it to having been intubated. I woke up Saturday and felt like an elephant was sitting on my chest. Even walking 30 feet to my bathroom made me so winded it was like I ran a mile.
I called the on-call surgeon and explained my symptoms. He brushed me off and said I shouldn't worry given my age and overall health. I hung up and immediately called my mom to come drive me to the hospital. I knew something was seriously wrong.
They immediately did blood work and a chest CT. Within 20 minutes of getting to the ER, they diagnosed me with multiple bilateral pulmonary embolisms. I had blood clots in both lungs. I could have died at a moment's notice.
I wound up in the hospital for a week on a heparin drip and on Coumadin for six months after."
"I picked up a long-term patient at County Hospital who was both epileptic and schizophrenic, and she told me her history with incredible insight and understanding.
She was there because she was on Dilantin and meds for her schizophrenia, or so she said. She said, 'I'm taking all my meds, but I begin to cut back a bit on the Stelazine for schizophrenia. Then I get a bit more paranoid and figure I'm being poisoned with the Dilantin, so I cut back on that. Then, I have a seizure, which cures my paranoia for a while. Then I start taking my Dilantin and Stelazine again, but then I get paranoid and stop taking as much of the one or the other. Then I get more paranoid again, stop my Dilantin, get a seizure, and I ended up in here.'
She knew exactly what was going on. She had incredible insight, and her records showed she was right.
Seriously, she had incredible insight into what was happening, but she was completely powerless to stop it. The seizures made her sane a while, and things would balance out and finally a few times a year she'd end up in the hospital because it would get out of control."
"I'm a medical student, and one time, I was the patient and diagnosed myself.
I had this gnawing, dull pain on the ball of my foot for almost six months. However, during my surgery rotation, it got progressively worse since I was standing for most of the day. I couldn't even walk barefoot anymore (I had to wear padded flip-flops at home or custom orthotics insoles outside). My foot would hurt at the end of my runs, when stretching my foot, and when pushing on the ball of my foot.
I told my primary doctor that I thought I had a sesamoid fracture because of my symptoms, risk factors, and duration of the pain. She didn't think so, and told me to do RICE (rest, ice, compression, elevate) even though this had been going on for months. I said okay, but also asked for a sports medicine referral just in case I couldn't find time to come back to follow up with her if RICE didn't work.
The sports medical doctor took x-rays of both feet, and he saw that one of the sesamoid bones had fractured into two now VERY separate pieces. I'm in a walking boot now and they're thinking I should have surgery if the pain doesn't get better!"
"My attending had a patient with diarrhea, and although he looked and insisted that he felt fine, his wife was insisting something was very wrong, and she pleaded with us to do some blood work. So we did, not thinking we were going to find anything. It turns out the guy was having SEVERE kidney failure due to his dehydration from diarrhea. We would have never run that test and sent the guy to the ER if his wife didn't suspect that something was terribly wrong."
"As a Speech Therapist, I diagnosed (via Google) my patient with Oesophageal Achalasia which is a rare condition. As a speech therapist, my knowledge doesn't really extend as far as the esophagus. This poor man was basically regurgitating everything that he ate or drank, was losing significant amounts of weight very rapidly, and his doctor didn't know what to do with him. I referred him for a barium swallow and insisted on attending. Before the procedure started, the consultant told me I was wasting his time with this patient who clearly had a swallowing problem, not an oesophageal problem, and I needed to do my job properly. I said we'd wait and see what happened.
The barium swallow clearly showed only the tiniest trickle passing into the patient's stomach, and he had to run off to the bathroom to regurgitate all the barium fluid he had just taken. In fact, it was worse under the x-ray than even I had expected. He was diagnosed with achalasia as I'd guessed, and he had to have a PEG tube inserted so he could meet his nutrition and hydration needs. Unfortunately, they weren't able to improve his condition but he probably would have died of dehydration or starvation had I not got him to that procedure. The consultant didn't apologize or admit he was wrong, of course!"
"My sister suffered from years of issues that doctors kept writing off as neuropathy, fibrosis, kidney infections, and other ailments. She kept saying, 'I think it's Fabry's,' but she kept getting ignored. One doctor even laughed at her and said she needed to stop using Google and listen to the people with years of medical experience.
Just last year she set up an appointment with a geneticist, and it turns out, she was the 1 in 100,000 to have the disease.
Now she's being treated properly and has found an amazing support group, and is able to much better handle the pain and complications that come with her disorder."
"My boyfriend's dad was quite overweight and took up a light exercise regime and started to watch what he ate more. However, he was rapidly losing a lot of weight. My boyfriend was talking about how great it was, but I thought it sounded like too much weight loss in a short time for the small changes he'd made.
He then said his dad kept getting up at night thinking the heating was on because he was so sweaty and hot. However, he went to his dietician and they said it was just his body detoxing.
I told him that's not true, and he should go to the doctor. Rapid weight loss and night sweats are some of the classic signs of tuberculosis and lymphoma. I said it might be nothing but it could be something. Also, considering his mom had TB years ago, it could have been 'latent' for all this time and suddenly become active.
My boyfriend didn't listen to me, and months later, he tearfully told me his dad had testicular cancer. I thought this was strange as it's typically a young man's illness, but I comforted him and asked why he didn't tell me his dad had surgery. He told me his dad hadn't had surgery yet, but he did take a blood test. Blood work provides a reason to perform the surgery but you cannot diagnose from it. I tried to explain and told him not to worry, they'll take it very seriously and deal with this quickly. Anyway once they do the proper procedure and check-up it turned out he did have TB in his testis!"
"I worked with an interventional radiologist/venous disease specialist, and we had a self-referred patient who came to see us. She started off with, 'Well, I've done lots of research on the internet,' which is ALMOST ALWAYS A BAD START. However, this lady was a competitive cyclist and complained of unilateral leg weakness during her rides. She was otherwise very healthy.
She had cycled miles and miles every day for many years. Suddenly, she could barely finish a five-mile ride. She found the diagnosis of external iliac artery endofibrosis online. This is very, very rare. She asked my doctor to order her a CT scan because her other doctors would not. Since we worked next door to a CT scanner we said SURE! It turns out she was right. She was then referred on to a vascular surgeon, and I assume made a wonderful recovery. One of our shorter consultations since it was so easy to rule in/out, and she presented well researched, compelling evidence."