Going to the doctor’s office is never any fun. It doesn’t help when you are a nervous wreck or stressed about what your doctor might say. All the tests and exams that can come along with getting a diagnosis can be tedious. Then, when it comes to getting the diagnosis, whether it was expected or not, that’s a whole other story. Along with a diagnosis, you have to discuss treatment plans, medications, and more. So when you have your nerves all knotted up, waiting for a diagnosis that sometimes seems to take forever to come, you don’t expect to hear something inaccurate like a misdiagnosis.
There’s nothing like getting a diagnosis that can be scary, just to find out later on down the road that it wasn’t even a correct diagnosis. Whether it’s something small, or a major issue, a misdiagnosis is ridiculous to think about. In this article, people share their stories of a diagnosis just to find out later on that they were given incorrect information. Maybe you can relate to some of their stories, but let’s hope you don’t.
20. A painful misdiagnosis.
“Every month at “that time” since I was 13, I would throw up and faint from the pain of cramps. Been to the ER millions of times, in my hometown and at UCSF hospital. They all told me I was a “drama queen” (one doctor did use that term), and I had severe cramps due to high sensitivity for pain. When I met my boyfriend (age 20), he introduced me to a family friend doctor who ran every test in the book and even put a camera up there while I was awake.”
keettykat goes on to say, “And finally, a cat scan showed that I had cysts forming and bursting almost every single month since I was 13 $#%@-ing years old. I was hospitalized because my left Fallopian tube was clogged (almost shut) and formed severe endometriosis. So, I spent seven days in a hospital bed flushing out my entire system. I hope one day I can have my own kids too, but it doesn’t look good. They also told me they couldn’t find my ovary.” On top of being misdiagnosed, a doctor should never belittle someone’s pain tolerance like that. Keep reading for more misdiagnosis stories.
19. A crazy two-part misdiagnosis story by someone anonymous.
“I started twitching when I was in the sixth grade and a neurologist understandably assumed that it was Tourette’s. I can’t really blame him for that one. Even as tons of evidence to the contrary began to pile up, however, he stuck by the same diagnosis he had thrown at me the first time I visited his office. Throughout all of this, I was desperately trying to get him to pay attention to the shoddy state of my immune system. At this point in my life, I had already become asymptomatic for Strep and got, at absolute least, an infection a month. When my twitching ceased for more than three months, I suddenly failed to meet the diagnostic criteria for Tourette’s & he stuck me with a diagnosis of “Nothing.”
“This case of “nothing” required Risperidone (Schizophrenia), Aricept (Alzheimer’s), Klonopin/Trazadone/Remeron (insomnia), Tenex (ADD) & many more. I was twelve at the time and still have a difficult time remembering that year. I didn’t really know any better & continued to see him until I was fifteen when the aforementioned “evidence to the contrary” could no longer be ignored. While in his care, I developed Narcolepsy, Cervical Dystonia, Epilepsy and experienced plenty more transient conditions. For the last year that I was a patient of his, I had been struggling to convince him that I had an immune disorder. He didn’t think my theory was worth even a referral to a more knowledgeable specialist. Somehow this neurologist knew without any shred of doubt that my immune system was fine.”
“He didn’t think my theory was worth even a referral to a more knowledgeable specialist. Somehow this neurologist knew without any shred of doubt that my immune system was fine. The last time I visited him, I sobbed in his office, begging him to help me and he looked me in the eye and said, “I don’t think there’s anything wrong with you.” It turns out I had a massive, unchecked infection that had reached my nervous system. Had it been caught in the first stages, it could have been completely forgotten about with two weeks of antibiotics. Instead, after a year of high-dose antimicrobial therapy (for more than just that infection) at seventeen years old, I am permanently damaged.”
“My symptoms have improved drastically and I have forgiven most of the doctors that missed my diagnosis over the years, but I can’t seem to forget the one that kept me under his care for three years without ever having the courtesy to even entertain the notion of a diagnosis. Had he not been content with throwing drugs at me, had he looked at all, my infection could have been found quickly and easily. But, from what I can tell, he had no interest in taking advice from some stupid kid even though I was pointing him in the right direction. I try my best to tell myself that he couldn’t have been expected to listen to me, but I can’t accept that. He should have listened to my results. I got my blood drawn once a week while under his care & not once did it come up without an infection.”
“My family doctor has taken care of my family since he started. I have heart problems, breathing problems, am hypoglycemic and have depressive episodes. I also have an undiagnosed issue that randomly causes me to throw up every day for a month, usually leading to a day where I throw up for 4-8 hours, however long it takes for me to be taken to the ER to be given intravenous medications. My liver has swollen, and I now need medication that is actually for chemo patients to stop the throwing up.”
“However according to my doctor, I am only hypoglycemic. This was only found out when at 14, my mom threw a fit for the testing. It turns out me blacking out was my sugar crashing. I now eat every few hours to make sure I stay in range. He will not listen to any issue from me, only the other members of my family. I can not wait to move onto my husband’s insurance so that I can go to a different doctor or have enough money to pay for a check-up.”
“I had this bump on my tongue; my doctor told me it could be a sign of HIV and gave no other explanations of what else it could be. So, I had all my labs done and an HIV test done. I had only been with two people and yet felt like the whore of Babylon. I called my boyfriend (who is now my husband), crying and telling him he needed to get tested. Then, I had to wait 2 weeks (this was back in 2000). I remember holding the sides of the table in the waiting room for the announcement of impending doom.” says hkreilly80.
“Another doctor came in giving me the results of my labs and went to leave. I said, “um, what about my HIV test”? she looked at me like I was nuts, and said “uh, no HIV, you are fine.” She asked me why I was worried. I showed her the bump on my tongue and told her what the previous doctor had said. She had this look of shock, and horror on her face, and said, “yeah that is due to a vitamin deficiency, just take a good multivitamin, and you will be fine.” Here I thought I was dealt the death card, and I just needed more vitamins.”
“I donated blood at school. Three weeks later, I got a letter from the Red Cross advising that they had tested my blood. The test results were 93% certain I was HIV positive. I shook uncontrollably, reading that letter. Furthermore, I could barely stand. I checked the address and name 30 times–but it was always me. I cried, and called my girlfriend, the only person I had slept with. Then, I left a shaky message about needing to talk. I showed her the letter. She was sure it couldn’t be true, but I could tell she scared too.” shares Horaenaut.
“We took me to get tested, the doctor tried to reassure me by saying it was highly unlikely given my “lifestyle choices” that I had HIV. Still, it was an agonizing week waiting for the blood test results (was it really only a week?). I started seeing the stupid “other symptoms” of HIV that I read about on hypochondria-inducing medical websites. I know AIDS is no longer a certain death, but when we finally got the results, it felt like I had just been proven innocent after spending 14 years of a life sentence in jail. No HIV. No idea why the false positive had turned up before. But they were certain that there was no way I could be HIV positive.”
“The summer my children were 9 and 6, I took them with me to a doctor’s appointment to have a growth on my scalp checked out. It hadn’t been there 2 months prior, so on the way to grandma’s, I decided to get it checked out at our local walk-in medical center. Within minutes my children and I are in an examination room talking about what to get for lunch after I see the doctor. I reassure my guys that mommy just has a little bump on her head that she wanted the doctor to look at. The doctor comes in, takes one look at my scalp, and tells me its small cell carcinoma, and by the size of it, it’s quite advanced and that I should start thinking about my final arrangement as I probably only have 2 to 3 months left to live.” says jerseyg67.
“As he’s saying this, I am looking at my kids’ faces wishing he would just shut up and wondering how he can be so matter of fact in front of them. The doctor finishes delivering my death sentence and promptly walks out. At this point, my boys are crying, and their eyes are HUGE with terror. “Are you going to die? “is a question I didn’t know how to answer when my 9-year-old asked me. I called my husband, my mother, and my dermatologist. So, I told the dermatologist the story and got an appointment for the very next morning. I show up at the dermatologist, she takes her one look and declares it a wart. (I was grossed out but relieved). She removed it right then and there. That’s my worst. I got to see the fear of my imminent death in my children’s eyes over an effing wart.”
“I was trying to jump from my little brother’s bed to mine. I failed, landing squarely on the floor, and broke my arm. We went to the doctor that night, but the jerk didn’t even bother to take an X-Ray. He told us that I had just bruised my arm and that I would be fine. One week later, I’m still in an immense amount of pain. Pain really didn’t make me cry much as a kid (and when it did, all it took was a joke for me to start laughing and forget about it), but I was still crying over my arm.”
JackTheFlying continues their story by saying, “My parents ended up taking me to another doctor, who took the time to… well you know, do his job and take an X-Ray. It turns out it was broken. That was also the day I learned the word “Schmuck.” Our new doctor used it to describe our old one.” No kid should have to deal with pain like that and be ignored; what on earth was that first doctor thinking not doing a simple x-ray? Keep reading to learn more about terrible misdiagnosis stories.
12. Things like this could easily be avoided, too.
Sofa_Queen shares a story, “Not me, my husband. I took him to a minor emergency clinic for pain in his leg after a fall. X-ray done, Dr. said looked good. Said it must be from a disc in his back, pain radiating down his leg. I went to the spine doctor after images (not sure if CT or MRI, hubby didn’t ask) had injections in the spine. No help. I went to the second doctor, had a test done for blood clots in the leg. Nope. I came home one afternoon to find a big guy on the floor, crying from pain.”
“Took him to my Dr, whom I had been trying to get him to go to for weeks. One x-ray later, broken tibia. It started as a hairline fracture but progressed to a total break since he had been walking on it for weeks. I told him to sue the first two idiots, but he’s such a laid-back guy he didn’t want to go through the hassle.” Something that could have been totally avoided had the doctors actually given the correct diagnosis. Keep reading for more terrible stories about people who had a misdiagnosis.
11. Some doctors don’t know everything and give a horrific misdiagnosis.
“My friend was told, “Your child has a calcium deposit in his heart, that means that he probably has a trisomy, 18 or 23. Would you like to schedule an abortion?” She called me (as I was in school for genetics at the time) and asked me to research this a bit. A quick Wikipedia search alone said that 3-5% of babies with calcium deposits in the heart have a trisomy, but most kids with trisomies have calcium deposits in the heart. I don’t know what the frick that doctor was on.”
“They didn’t even test her kid for genetic deficiencies. They just saw via ultrasound that he had a calcium deposit in his heart, something that will go away on its’ own in 90% of babies. Then, they told her she should get an abortion because there was a 3-5% chance her kid would have a trisomy. I was 21 and in school at the time and diagnosed her doctor with moron syndrome…. The kid is about a year old now and 100% healthy (even a bit tall and smart for his age).”
10. Unfortunately, this person has several misdiagnosis stories to share.
“I have two. Both could’ve killed me. First, I went to the hospital after peeing blood all day and after suddenly having passed many kidney stones. The ER doctor was a total jerk and was close to the end of his shift. I told him I knew kidney stone pain, and he refused to do a CT scan, told me to suck it up, and sent me home with the diagnosis of a UTI. Fast forward two hours, when I pass out from the pain. My boyfriend rushed me back to the ER. The doctor immediately sends me for a CT since I’d mentioned that I had Medullary Sponge Kidneys, which should’ve been a freaking red flag to the other doc, and I was in surgery within thirty minutes. I was septic, had stones, blocking both kidneys, that were both over 1/2 an inch long.”
Melanie continues, “Second, I was told the day I was scheduled for a certain type of fertility test that I was pregnant. I knew something wasn’t right. My OB did blood work and refused to do a sonogram. A week later, I start to bleed. Go to my OB. He does a sonogram of only my uterus and says I’ve had a miscarriage. Blood work two days later showed my levels to be increasing. He ignores it. The next Monday, I’m at work. The worst pain I’ve ever been in.” I call my OB, who tells me I’m overreacting and that I need to go home and take pain meds and a Phenergan and sleep it off. I call my his and back and tell him I won’t be able to get out of the car by myself.”
Melanie goes on to say, “He meets me in the driveway, and catches me as I black out. He drives me to the ER, tell them I’d had a miscarriage a week prior, and that I “seem to enjoy ER visits.” Fortunately, they see the miscarriage and my writhing around on the bed while blacked out, as major red flags, and immediately do a sonogram. Then call my doctor to tell him that not only did I not have a miscarriage, but I was still pregnant; it was a 12-week ectopic pregnancy that ruptured. I was bleeding out. Again, immediately taken back to surgery. I had over 450cc of blood in my abdomen. I lost my right Fallopian tube. My doctor acted like he was mad that he was proven wrong, forgetting that I’m a mother and that his mess up could’ve left my son without a mother.”
“EDIT… I gained a significant amount of weight over a two-year period. So, I went to my PCP, told her I was eating well and doing Pilates. She told me I was lying about what I was eating. Fast forward two years, and after suffering many miscarriages, my OB/GYN asks if my PCP had ever tested my thyroid. Nope. It wasn’t functioning. I’d gained almost 50 pounds and lost many pregnancies because my doctor never tested my thyroid. She’d run blood work, which didn’t show gallstone issues in my mother or sister. (I was so sick that I threw up every day, all day for over a year.). I finally flipped out in her office and told her to order the dang sonogram already! She did, and I was right. I had surgery the next day.”
8. Even nurses should double-check things to prevent a misdiagnosis.
“Just last week, I had to call my new PCP and request a refill of a muscle relaxer a day early, since I break them in half and several ending up breaking again, getting really crumbly (and they taste like butt), so I waste them. The nurse (or whatever she is) calls back and leaves a voicemail saying, “He prescribed 180 of them!! There’s NO WAY you could be out this fast!” Well, I only got 60. My pharmacy even faxed them and told them so on Thursday. I got no reply that day, so I called back and had to leave a message since they skip out early on Fridays. Then, I got a call this morning asking what pharmacy it was sent to, and I was dumbfounded.”
“I had worked with the same software they use, and I know for a fact it can be looked up to see what pharmacy was used. Besides, I only use one! She’d sent an ointment c lidocaine in it to a different pharmacy completely about a month ago. I called and explained I don’t use that pharmacy, haven’t in years, and their office should have no record of me using it. She got upset with me and said, “Uh well, it’s in here!” So, I had to say, “Uh well, in that case, as the nurse, you should have confirmed with me which pharmacy it should be sent to since there are two in there. Now, remove X pharmacy as Y pharmacy is the only dang one I use.” Apparently, she’s a few fries short of a Happy Meal.”
Bob4apples shares, “To make a long story short, when I was 12, the front wheel came off my bike at high speed. I arrived at the hospital with two broken teeth and substantial lacerations on my chin and the knuckle of one finger, in addition to the other relatively inconsequential effects of sliding down the road on one’s face. The finger hurt so much that I was basically unaware of the other injuries. After a half-hour or so, I’m attended by the one person in the world I did not want to encounter in an emergency room…my family doctor. As he’s putting 14 stitches in my chin and 6 in my finger, I say, “aren’t you going to x-ray the finger?” He says, “No, it’s fine.””
“Fast forward a few weeks. The finger is bent at the knuckle and won’t straighten. Now he decides that an x-ray might not be a bad idea. After looking at the x-ray, he concludes that the tendon over top of the knuckle had gotten damaged and that I would need surgery to shorten it. So I go in for surgery. When I’m sufficiently recovered, they tell me that the surgery was a failure because when they opened my finger, they discovered that the bone had gotten crushed in the accident and, since it had been allowed to mend that way, the only way to fix it would be to re-break the finger (a procedure that I have chosen to forego).”
Some of these misdiagnosis stories are insane, including this one! DestroyerTZ shares their story, saying, “I had this happen to me when I was young as well (like 10-12yo). They told me it may be signs of appendicitis and said they were going to send me to a specialist to check it out. When my parents took me there, the nurse said I was scheduled for surgery. My parents and I freak out a bit and opt to find another doctor for a second opinion.”
“I end going to the ER of a different hospital having all sorts of tests done, all coming up negative until they did a spinal tap. It turns out I had Spinal Meningitis. A nurse from the other doctor kept calling our house, telling my parents I’d die if I didn’t have the surgery, when in reality, the ER doctor told me that surgery would have killed me. Fun times.” As a child, to think about that would have been quite scary, and for the parents as well. Thank goodness they didn’t listen to that nurse.
“I was playing hockey and was part of a fairly harmless check against the boards, nothing significant, other than having my elbow push a rib into my spleen and lacerate it. I immediately knew something was wrong and started sweating badly as well as going pale. Upon going to the emergency room, I was put ahead of others because of the symptoms. I had low blood pressure and felt a bit dizzy. The doctor diagnosed me with a “contusion” and said x-rays shouldn’t be needed because after feeling the exterior of the area that hurt, he detected nothing broken. I was sent home,” says i_am_ericc.
“The next day, I could barely stand up. If I was up too long on my feet, I would blackout and fall over. Using the bathroom was a serious hassle, and also, performing the act was pretty painful. We decided to follow up with a local doctor since the game I played was out of town. After some x-rays, I was immediately rushed to a larger hospital upon the discovery of my actual injury. They told me I had lost a ton of blood internally and had a 50/50 chance of removing my spleen. Basically, I could have died overnight if I had kept on bleeding out. What was odd is there were no signs of any of this externally, such as bruising or anything. I ended up staying 3 nights there and keeping it. My hockey season ended early, though.”
4. Luckily, this misdiagnosis got figured out in time.
“My senior year of college, I appeared to have contracted a case of pink eye. I stopped by the college med center. No one argued with my assumed diagnosis. They gave me pink eye drops of some sort to get rid of it within a week, supposedly. Two weeks go by, and it does not seem to be getting any better, so I manage to get an appointment with an actual eye doctor. He continues to not necessarily argue with the diagnosis and gives me something (stronger?) else that should clear it up. After another month goes by (due to tricking myself into thinking it was getting better)” shares badchecker.
“I get another check-up from the eye doctor pointing out that I thought things were getting better, but they seem to be getting worse now. They seem secretly worried and surprised to see such a thing. Two weeks later (or so…the timeline on all this is sketchy at best), I finally receive a phone call. It starts with the question, “Have you ever heard of chlamydia?” I’ve never looked up anything on google as fast as the words “chlamydia std permanent?” in all my life. By the end of said google search, I have the knowledge that Chlamydia of the eye is the leading cause of preventable blindness in the United States…(luckily?) it only took him 3 months to figure it out. So yup, there’s that.”
“My fiance had issues with recurring infections regarding her tonsils. As the daughter of two cardiologists, she wasn’t exactly an idiot regarding her own body and health and told the fellow about her issues and her desire to get her tonsils removed. He, of course, scoffed and disregarded her. Imagine that the contempt doctors have for web MD was amplified for people with MDs in the family. She pointed out that her tonsils were so bad she could produce tonsil stones (that foul-smelling white stuff) on demand.”
Trodamus goes on to say, “He still didn’t want to hear it and didn’t want her to show him. At this point, a veteran physician that knew her parents came by and heard some of the stories. So they gave her a tongue depressor, and he told her to show them. And she did: a quick press on one of her tonsils sprayed the mirror with the stuff. The sage advice the doctor gave the fellow: If they say they can show you, let them!” Keep reading for another misdiagnosis story.
“My cat was outside when I heard him wheezing. I brought him in, and he continued for a while. He was kind of unresponsive and didn’t move very much. We brought him to the only vet open, 45-minute drive. The vet wanted to do an x-ray/test for cancer. It could cost up to the thousands. My dad, after learning this, immediately asked how much it would cost to put him down. The vet’s reaction was priceless (upon later rumination). He also asked if it could be asthma.” says Ha_window.
“The vet said it was “VERY rare” for a cat his age to suddenly start showing signs of asthma. My dad insisted that as well as keep him in the oxygen tank, they give him a steroid shot. It turns out we avoided a butt-load of medical bills because my dad is a heartless cheapskate (not really because we were spending a lot on our dying dog at the time). We still have a report the vet wrote for our visit on our fridge. It makes my dad sound like a heartless cat-eating jerk.”
1. This is why doing tests accurately is important to prevent a misdiagnosis.
“My “growing pains” turned out to be maltracking knees and scoliosis. When I felt like my heart was skipping beats and was told it was my anxiety. I found out later it was a Mitral Valve Prolapse. Not an inaccurate diagnosis, but I’ve also gotten: “I see no visible break, but it’s definitely broken.” Uh…thanks, doc? I think. Also, there was the time I went to the emergency room for what turned out to be an easy treatable bladder infection but got treated for STDs. Not any specific STD, they just pretty much instead of cutting off a branch burnt the whole forest down.”
Owlshark continues with their story to say, “Two big shots, and lots of pills that caused a lot of stomach issues later on. They did a pap smear but didn’t do any sort of urinary tract analysis on me and didn’t do an ultrasound. I was 3 hours away from my Primary Care Doctor. When I got back a few days later, he called the hospital I was at to get my results. Apparently, the lube they used when they did the test botched the results. I raged pretty hard that day.” That was the last misdiagnosis. Can’t get enough? Keep reading about the craziest nights at the ER.