Whenever we feel slightly under the weather, the first thing we do is Google our symptoms and diagnose ourselves immediately with some horrible and rare disease. In some cases, our symptoms aren't real and we are being overly dramatic. However, there are times that the pain is consistent, and by listening to our body, we can tell that something is definitely wrong.
In this article, people share the time a self-diagnosis turned out to be actually correct.
[Source can be found at the end of the article]
Difficulty swallowing food.
Just the other week, I had a 60-year-old guy, reeking of cigarettes, come in for upper endoscopy (camera to look at the esophagus, stomach, and part of the small bowel).
He was describing food getting stuck mid swallow in the middle of his chest.
“I think it’s esophagus cancer,” he said.
I was thinking that too but didn’t say anything. Sure enough, that’s exactly what it was.
Even the dermatologist confirmed it.
Hidradenitis Suppurativa. Recurrent severe skin abscesses. She came in saying that she was worried she had it because she’s had some abscesses in her armpit. Nine times out of ten it’s because of shaving with a dirty razor, which is what I told her. I’ll be damned if she was right. Ended up having 5+ abscesses that formed tracts requiring surgery. They recurred a few months later. Sent to dermatology who confirmed the diagnosis.
When her dead husband appeared in her dream.
My stepfather is a doctor and he told me this story: There was an older Irish woman who correctly predicted that she had a tumor in her left lung roughly the size of a golfball. She has never smoked or done anything that made her a risk but she insisted her very mild cough was the result of a large tumor and demanded to have it checked out. She was dead on and claims she saw a person on tv with the same symptoms and when she fell asleep her dead husband in her dream told her to go to the doctor and here she was.
A visible hole and screw in skin.
I went to A&E saying I was concerned about the infection in my recent skin graft, requesting to speak to a surgeon because there was a risk the metal inside might get infected if exposed to the air. They did not take me seriously and sent me home.
I came back the next day: “THERE IS A HOLE IN MY ARM AND I CAN SEE A SCREW.” The metal got infected and i had to have a massive surgery to remove it!
Chronic pancreatitis, not alcoholism.
I had pancreatitis a few years ago (around 2014). Always had stomach problems, but had no idea why until that day.
2 years later (in 2016), I had the same terrible pain. I tried to wait it out for 5 or so days, but broke down and went to the ER. I said I think I have pancreatitis. I was treated like a drug seeking alcoholic (and I stopped drinking in 2014 because of pancreatitis). Doctor tried to tell me it was indigestion. When I asked why I was in constant pain even when I hadn’t eaten in 3 days, the doctor completely changed her attitude and pretty much told me we’re not going to help you.
About 3 months later my lypase levels were high enough to be considered an attack, so I was admitted and was diagnosed with chronic pancreatitis (not alcohol related). I still think about that doctor and it makes me so angry. I wonder if my life could have been a little better if they took me seriously and found it out sooner.
That jar is NOT filled with snot.
A patient in ER had a runny nose. She was insistent that her cerebrospinal fluid (the fluid that surrounds your brain) was leaking through her nose and causing her to have a runny nose.
This is usually pretty unlikely, especially without a history of trauma. I order a CT of her head but it doesn’t show anything, and she otherwise looks fine so she’s sent home. She comes back the next day with a jar of this fluid she had collected saying “this isn’t snot!!” We ran some more tests and turned out she was right. I’m glad she was persistent.
When the doctor consulted the internet.
I have a recurring rash in my groin. It’s not serious beyond it can be maddeningly itchy on occasion. I went to a dermatologist but after several unsuccessful attempts to treat it with a variety of creams I took it upon myself to try and get to the bottom of the cause. I eventually came across an obscure website that had my symptoms to a T and called it Red Ball Syndrome (I kid you not).
Anyhow, I then went to my doctor and described the symptoms. After some head scratching, he consulted the Internet, eventually stumbling across the same website I had found previously. He then sent me to a neural specialist who confirmed the diagnosis.
This was several years ago. I see it’s now called Red Scrotum Syndrome, which is marginally more classy than the previous name.
Definitely not dried up joint
When I worked as a camp counselor, I woke up one morning with severe joint pain. I’d slept on the ground the night before so I chalked it up to that. When it didn’t go away after a couple days, I went to the camp nurse who diagnosed me with dehydration. After downing a 12 pack of Powerade (I’m still surprised I didn’t pee blue), I still had the joint pain. A bunch of the other counselors were convinced that it was stress or that the fluid in my joints had dried up.
Then I went and did the one thing you should never do: I logged onto WebMD and searched my symptoms. And right after cancer was Lyme disease. It made a lot of sense but I’d never had any rash or noticed any tick on me. So I went back to the camp nurse and she had me leave camp to get a blood test and I ended up going to the ER because there wasn’t a clinic available. The nurse gave me a shot for the pain, drew my blood, and an antibiotic on an empty stomach just in case. Turns out I was allergic to the antibiotic so I got hives AND I threw it up. I received a call the next day that yes, I did have Lyme disease.
Low cold tolerance.
I diagnosed myself with hypothyroidism after googling and couldn’t get the specialists to listen. I ended up finally getting diagnosed by an alternative medicine doc!
I was so tired and had insomnia so I couldn’t even sleep. But the symptom that really got to me was cold intolerance. It was winter, and once I got cold, I remember I couldn’t get warm. I would sit in front of the heater, covered in jackets and a giant blanket, and it would take me what felt like hours to get warm again!
I was 20, and my results were a little off (if you’re curious, T3 was low normal, TSH was on the high end – but for an average woman. I was an otherwise healthy and active 20-year-old, not a 40-year-old woman), but not off the charts. I also was so tired that I had to take a semester off college, but since I was 20, everyone wanted to just tell me I was depressed. I kept saying, “I’m depressed because I’m so tired I cannot go to school and my grandma has more energy than I do and no one knows what’s wrong with me,” but they didn’t believe me. Anyone who knew me knew I wasn’t depressed. I was always a very happy person until this happened!
Finally, the alternative medicine doc got me on L-thyroxine. I only needed 75mg (a pretty low dose), and then all the symptoms were just gone. I was able to go back to college and even graduated on time. I’ve been on this dose for 10 years now, and can always tell when it’s off again (one time, I started taking pre-natals that blocked the meds from working, and the other time was when I became pregnant – generally you need a slightly higher dose), because the cold intolerance comes back.
Run the tests for the sake of newborns!
I caught whooping cough (bordatella pertussis) and literally begged the doctors to run tests. Weeks and weeks passed and they just told me it wasn’t whooping cough, but I was catching back to back flu/colds/bronchitis.
Girlfriend also caught it and we again begged them to run tests to which they told us they don’t want to, because by now they can’t treat us anyways, so it made no difference… (WHAT?)
I explained that as they told me it was just a cold, I’d been going to work for weeks, while sick (I hate this too, but I wanted to keep my job so I went) and 2 colleagues have newborns, so it would be good to warn them in case they catch it off me.
They ran the tests and diagnosed us. I was correct!
Taking the matter into her own hands.
I noticed the symptoms pretty quickly and thought my childhood eczema had come back to haunt me. When treatment for that only seemed to make it worse, I figured out that it had to be scabies. All the normal problem areas, itchy at night, etc.
The problem was, I couldn’t get the lotion to treat it without a doctor signing off. I went to the doctor and she immediately starts diagnosing me with everything besides scabies while I’m telling her multiple times that it’s most definitely scabies. I went 3-4 times and the last time, I left when she refused to allow me to get the treatment cream and wanted to say I had allergies instead.
I told her I was not putting up with this torture while she keeps taking my money and misdiagnosing me and she goes, “Well, I’m sorry, you aren’t getting scabies treatment without a doctors note, and I really don’t think you have scabies.” Apparently, she never heard of Amazon.
I went home and ordered Permethrin,10% off Amazon (5% is what’s used for treatment), mixed it with a thick lotion and it cleared right up! I was so tempted to call her and let her know, but she probably would’ve said one of her earlier attempts at treatment finally worked.
Seeing a second specialist is always a good idea.
When I was 19 I developed marble sized tender areas scattered on my legs. I called for an appointment, and the receptionist didn’t know what to put for a reason for the appointment. She said she would put me for a regular check-up, and I could talk to the Dr then. When I got there, the assistant prepped me for a check-up, had me undress for a pap smear. Dr came in and before I could speak, she seriously told me off. She said I didn’t need a check-up, I had a pap 7 months ago, and that I was wasting her time and people like me was what was wrong with the health care system. She barely looked at my ‘lumps,’ and said they were lipomas (as if I knew what that was), that it was nothing, and left.
The lumps grew a little. I got a couple more and they were more tender, to the point I couldn’t wear certain socks or clothes that touched them. I wasn’t living at home, but my mom happened to notice one day when I was visiting and made me go to another doctor a couple months later. Turns out it was strep. I had had a sore throat at some point then it went away, so I thought. Took some antibiotics, changed my primary, and went on with my life. A few years later, I became a registered nurse. I had a patient that was very young and on dialysis. He told me his kidneys failed because evidently he had strep throat, didn’t know, and then it traveled to painful small lumps on his legs. He didn’t have insurance so he didn’t get it checked out, and a year or two later the strep had destroyed his kidneys.
The doctors that couldn’t even find his appendix.
I’m pretty sure I had a stroke last week and the nurse at my college thinks so too, but urgent care docs are stumped. I woke up one morning with dizziness, confusion (didn’t know where I was when I got off the bus that morning or how to get to school from where I was even though it was routine for me), having vision loss on and off in my right eye. They did a CBC and flu test, nothing significant except for anemia that I’ve literally always had. Never said anything was wrong with me except for that.
Then again, these are the same doctors that couldn’t find my appendix in an ultrasound (yeah I know it’s little but dammit they were looking for it for like 5 hours before they figured maybe I just don’t have one. They weren’t even gentle.)
That gut feeling that turned out to be correct
I had to return to the ER 3 times over the course of 3 months because of excruciating pain in my lower right abdomen. I knew without a doubt that It was appendicitis. My doctors didn’t appreciate that I had self-diagnosed myself. One even tried to perform a rectal exam. To which I asked, “I’m sure I have appendicitis. Is this necessary?” He said no and took his glove off. Still sent me home. Fast forward to 3 weeks later. My appetite was gone. I felt physically ill. I was afraid to do any strenuous activity just out of instinct. You could say I had a gut feeling.
Anyway, I go back to the ER where I told the doctor that I was certain I had appendicitis. He was certain I didn’t. So I begged him “whatever test it is to determine if I have it or not. Run it on me right now” the test results came back and they prepped me for surgery. if I hadn’t have been certain, my appendix would have ruptured in less than 2 days.
In severe pain for three years and no solution
I woke up with severe pain in my abdomen, went to the ER, said ‘hey I think this might be my gallbladder. My mom and grandma both had to have theirs removed.’ Dr scoffed and said I was far too young for gallstones. Then diagnosed me with a ‘chest wall inflammation’ and sent me home.
I didn’t have another attack for about six months, at which point I went from being a normal 20-year-old to being in pain every day, and unable to move.
I went to countless doctors, the ER seven times, psychiatrists etc… for three years. Every SINGLE time I went in I mentioned that I think this is probably my gallbladder, please check. Every single time I was dismissed and told that I was too young to have gallbladder issues.
I was called a drug seeker, regardless of the fact that I never asked for drugs.
My inflamed, infected, gallstone stuffed gallbladder ruptured on Christmas Day and it was FINALLY removed.
I lost three years of my life because doctors think they know everything.
When ‘getting some rest at home’ doesn’t help
A couple of years ago during the summer I started feeling really off out of nowhere. I had zero energy and ended up getting a really bad fever. Within a few days I developed a pretty bad cough.
I went to Urgent Care because I didn’t have a doctor at the time and they essentially pat me on the head and told me to get some rest. They told me I just had a cold or at the worst the flu and sent me home.
“Getting some rest” didn’t help. I was calling out of work every day and spending all of my time sleeping. When I wasn’t sleeping, I was up sweating and coughing. I went to the hospital because I was young and still didn’t have a doctor. They tested me for lyme disease and sent me home.
After a week of going through this and still not getting ANY better, I honestly didn’t know what to do. I had stayed home another day and when I had gone up the staircase in my house, I had to sit down at the top because I couldn’t breathe after and felt like I was going to pass out. I texted my mom and my boyfriend and told them I thought I had pneumonia after googling about it for a little while. They both disagreed. I was 22 and my mom swore people my age didn’t get pneumonia. I decided I couldn’t take it anymore and drove myself back to the hospital.
Sure enough, they took my temperature. 102 degrees. They took x-rays and shockingly enough, I had a pretty serious infection in my right lung. I ended up staying in the hospital for 6 days with antibiotics through an IV.
This doctor that followed her instinct.
I started losing my hearing on just my right side when I was 19. I went to my first ENT, and tests showed that I had lost 20% of the hearing in my right ear only. The doc said I had lost it by listening to my music too loudly with earbuds in, that I had given myself nerve damage and that there was nothing he could do.
My dad didn’t like that diagnosis, and we both knew something had to be wrong since I only lost my hearing on the right, and I had buds in both of my ears. A month or two later I was seen by a different ENT. My hearing was tested again, and I had by then lost 40% of it on the right. She again suggested it might be nerve damage, BUT since I was so young, and it was one-sided hearing loss, she gave me an MRI just to be safe.
Good thing she did! I ended up having an acoustic neuroma, a (thankfully) benign tumor, growing in my eighth nerve, and would have had serious neurological problems had it not been found! Ended up needing brain surgery to take it out.