Patients Who Diagnosed Their Own Illness Share Their Amazing Stories


You know what to do when you get sick, right? You go and see a doctor! But what if the doctor says there’s nothing wrong with you?

Then you have a dilemma. On the one hand, you have a person with many years of medical training and huge experience standing there telling you everything is fine. But on the other, your body is telling you something is wrong.

What do you do in that situation?

Well, here are some folks who have found themselves facing that exact scenario. They woke up one morning sensing that something was wrong, and here are some of the amazing lengths they went to in proving it!

1.

“My wife was visiting New York with her mother who was a nurse. They were traveling there for a medical conference. She had been feeling exhausted and some pain, but she didn’t know what was wrong. Her doctor kept on dismissing her because she was overweight and a woman. Visiting New York was her dream, but the pain kept stopping her from being able to do things. She was in the elevator, going up to her room, talking to her mother about it, when a fellow in the elevator piped up and said, ‘Excuse me young lady, but I think you have gallstones’. Turns out, he was a gallbladder specialist and was correct in his elevator diagnosis. She came home, had surgery, and was feeling better by Christmas.”

2.

“I went to the same emergency room twice and explained to them that something was messed up in my head. They diagnosed me with anxiety attacks both times. I had a stroke two days later.”

3.

“I was 9 when I fell off of my bike on a family bike ride. I was screaming a lot and saying, ‘My leg is broken’. My parents thought I was crying wolf and told me to walk it off. When I wouldn’t shut up, my dad carried me to the parking lot while my mom got the car. I remember my dad telling me to put my leg in a position if I truly thought it was broken, but he was still sceptical. Lo and behold, we went to the ER to get an MRI, and my leg had a spiral fracture.”

4.

“My dad, who is a great person but also an occasional jerk, took my 3-year-old sister to the ER with the flu.

Thing is, there was a meningitis outbreak in the area. So, the ER was packed. My dad, being who he is, tells the nurse that he suspects it is meningitis and to please bump them to the top of the list.

The doctor is pissed because she has no meningitis symptoms, no stiff neck, and no fever. They get into an argument. He orders a spinal tap ‘since my dad is concerned’ and not backing down at this point.

And, it comes back positive for meningitis.”

5.

“I had a patient yell, ‘Code Blue’ really loud from his room and, as we all rushed into his room, his heart stopped. Fortunately, he didn’t die that day.”

6.

“During my second lung collapse, the doctor was adamant that it was just a panic attack. Since it felt EXACTLY like my first lung collapse, I kept on insisting that he take an x-ray. After the x-ray results came back, he said, ‘Against all probable odds, you were right’. I had a tube in my chest within the hour.”

7.

“Last year, when my daughter was 3-months-old, she stopped eating and pooping. Then she started getting weak and limp. It got to the point where she couldn’t even open and close her mouth and eyes. The ER doctor said she was dehydrated and put her on an IV overnight. The next morning, she was even worse. How are you worse, but not dead yet? I don’t know.

Anyway, I read a NYT article that was meant to be a riddle for medical professionals, and the riddle described my baby to a T. Most of the commenters guessed infant botulism. So, I suggested it to the pediatrician that came in the next day.

He said, ‘No, she’s probably still dehydrated,’ (that immediately made no sense), and she’ll be fine. We could go home. Mind you, we live in NJ, and this was in NC as we were on the way back home from a road trip to FL. I wasn’t having it. We asked to transfer to a Children’s Hospital.

The docs there did every test they could think of and nothing was coming up. I begged them to test for IB, gave them full permission to laugh at my lack of medical expertise, and since they had already tried everything else, they obliged.

It was IB. I think it was the first case that hospital had seen in 20 years. The residents on her case even wrote a paper about her.”

8.

“I had a patient who predicted her own death. She was a relatively healthy 90-year-old with hypertension and diabetes. She woke up one 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 to confirm DNR/DNI. That evening, she had a massive heart attack and was rushed to the ER. We tried medical management, but per her wishes (the living will she had just signed 6 hours earlier), she did not want any invasive measures taken. She died about an hour after she came in.”

9.

“My husband went to the ER struggling to breathe and was told that he was having an anxiety attack. Several days later, after no relief, we returned to the ER. This time, he was diagnosed with CHF or congestive heart failure. Turns out his heart was smothering his lungs. Eighteen months later, he died at the age of 42. It’s not like those few extra days would have prevented it from happening (had he been diagnosed properly the first time), but it still infuriates me to know how little some doctors care!”

10.

“I went into the ER with a heart rate over 200 and told the girl at the front desk about it. She laughed, casually took my information, and told me to take a seat.

I waited for over 30 minutes while everyone else in the waiting room in front of me was called in. When they finally got to me, I went back into triage with a nurse who hooked me up to the heart monitor. When it showed that I had a heart rate of 222, she said, ‘Oh that’s not really your heart rate. These machines take a little while to adjust,’ I said ‘No, that really is my heart rate. That’s why I’m here today’.

She looked back at the monitor. When it didn’t readjust, she called the doctor in. All of a sudden, I was swarmed by about six doctors and nurses. They didn’t even finish the triage procedure before rolling me back into a room. Within 15 minutes, I’d been given drugs that stopped and reset my heart.

I just kept on thinking about how that dumb girl at the front desk ignored someone with heart attack symptoms, who claimed to have a heart rate over 200, which is literally the easiest symptom to verify. It takes 10 seconds to check someone’s pulse.

It wouldn’t surprise me at all if someone dropped dead in that waiting room.”

11.

“I’m an EMT. When my friend was in college, his appendix burst. He was in extreme pain, couldn’t really move, and was acting delirious. His girlfriend called 911 and said she thought his appendix burst. The ambulance showed up. The EMTs just thought he was drunk and refused to take him seriously. They took their time, gave lots of attitude, and lectured them about drinking underage, all the while, she was totally panicking and telling them how he doesn’t even drink and that he needed to be taken to the hospital right NOW. She was right, and the EMTs had almost killed him.”

12.

“I was having debilitating gallbladder attacks daily, but my doctor kept on saying that it was trapped gas (partly because he was completely incompetent and partly because my dad basically told him, “I don’t think anything is wrong with her.”) I spent 2 years in complete agony because my doctor wouldn’t do anything beyond blood work. Finally, my mom caught on that something was actually wrong after seeing me have an attack one day, and we forced the doctor to do an ultrasound and a HIDA scan. At 17, I had a diseased gallbladder that was functioning at 16%. I had it surgically removed 3 days later.”

13.

“When I was 8, I was having severe headaches. They felt like someone was constantly stabbing me in the eye. My mom, who’s an LNA, suspected it was nothing more than a sinus infection. She took me to the doctor to get it checked out and put on antibiotics, but they were ADAMANT that it was not a sinus infection. They claimed I was too young to get one of those.

For the next two weeks, I was in the hospital everyday. They were running all sorts of tests trying to figure out what was wrong with me. They checked my eyes, urine, and blood, but they still couldn’t find anything. The whole time, I was still having severe headaches that were progressively getting worse and worse.

Finally, they suspected that I could potentially have a brain tumor. This scared the daylights out of me and my family because my grandfather died of a brain tumor before I was born. They ran a CAT scan to check, but they failed to find a tumor. What they did find out, however, was that my sinuses were severely inflamed. I had a horrible case of sinusitis that needed antibiotics to treat. Once on the antibiotics, I immediately felt better within 5 days. After that, we started going to a different doctor.”

14.

“I had gallbladder problems some years back and went to the doctor. He said my blood work came back normal and that it was probably either indigestion or a strained muscle. I told him I knew it wasn’t. He asked me what I thought it was, so I told him I was certain it was my gallbladder and that it was full of stones. He told me, ‘You’re not middle-aged or overweight, it can’t be that at all,’ I told him, rather sternly, to order the ultrasound because I was very certain he was wrong about what he thought it was.

Half-hour later, I’m laying there getting the ultrasound done when the tech goes, ‘Yeah, I’m not supposed to tell you anything, but I’m going to anyway, this is a fat sack of stones. I’ve never seen a gallbladder this bad before’. My gallbladder was FULL of large and small stones. I cried and thanked him, then cried some more because I was so angry with the doctor and the nurse practitioner (and the previous nurse practitioner I saw a few months before for the same pain) who all wrote it off as a strained muscle in my back.

After the doctor saw the ultrasound, he came in with the nurse practitioner and 3 other nursing students to tell me, ‘I was right’ and to give them a lesson on how to listen to patients and to never just brush off their concerns and suggestions. Almost two weeks later, I was in for surgery.”

15.

“I self-diagnosed Rhabdomyolysis. I had the whole coca-cola colored pee thing, went in, and explained to him that I thought I had it (I couldn’t pronounce it, wrote it down, and showed him).

The doctor kind of laughed a little and said, ‘Man, this internet thing is not doing anyone any favors,’ (This was in 2005). He said, ‘Pee in this cup, so I can prove to you that you don’t have it’.

I pee in said cup, he takes a look and say, ‘Wow, I don’t even need to check this under a scope. I need you to go to the ER right now. Don’t go home. Someone can bring you stuff later, just go there right now! I’m calling them. They will admit you as soon as you show up’.

Sure enough, I spent 3 to 4 days in the hospital with constant full open IV drip, having to measure all my output, until some level (creatinine?) went back to a normal level. Apparently, mine was 1000x higher than it should be.”

16.

“A guy comes in acting very altered, and we suspect substance abuse. Toxicology screen comes back, and he’s on meth. Great, we get ready to discharge him.

His girlfriend stops us and says, ‘But he’s always on meth and never acts like this!’

We do a lumbar puncture, and the guy has meningitis. It’s scary how drugs can mask serious illnesses.”

17.

“My girlfriend had to go to the doctor five times before they agreed to scan her. She’s only 23. She had been telling them it was her gallbladder for ages, but they kept on saying that it was IBS or stress. Turns out she was right, and he told her she had some cracking gall stones. She now has no gallbladder and is much happier without it.”

18.

“I woke up one morning with a severe pain on my side. I instantly knew that I had a kidney stone (I’d passed one before). I’m a female by the way.

I couldn’t get to my regular doctor. So, I made an appointment with the first person who was available in order to, hopefully, get some pain meds to make passing it a little more bearable.

I went to see him, and he was hands down the most arrogant and condescending doctor I’ve ever met. When I tried to explain to him that I knew it was a stone, he told me that since I was able to walk into his office I didn’t have one. ‘If you had a kidney stone, you wouldn’t be able to move’.

I passed the stone two days later without medication. What a jerk.”

19.

 

 

“I started having painful abdominal spasms. I was sure it was my appendix. I have a very high pain tolerance. So, for 2 days, I was still carrying my heavy toddler and working out. I told my husband and family, and they wouldn’t believe me and told me it was just gas. But I knew that something was wrong. Anyway, I decided to go to the hospital, despite my husband’s protests that I was making a big deal out of nothing. The doctor didn’t believe me either.

They sent me for a vaginal ultrasound because she thought it was probably an ovarian cyst. I was pissed off they weren’t believing me, so I let them give me the ultrasound anyway. It came back negative, and they were about to send me home.

I decided to make my husband drive me to another hospital. Everyone was pissed off that I was ‘making them waste their time’ since my husband had to miss work and my mom had to watch our son. Anyway, it turns out that I had appendicitis, and my appendix was about to burst. The doctor said that if I would have waited a few more hours, it would have burst. I had surgery within an hour of showing up. I was so pissed off at everyone who didn’t believe me, haha.”

20.

“First time I went to the ER for severe menstrual cramps, I heard the nurse who was triaging me say, ‘So, now we treat period cramps?’ It was infuriating. I clearly wouldn’t be here if it was just cramps. Anyway, I’m scheduled for a hysterectomy in December. I’m scared to death, but I’m also tired of having side effects from the drugs and the symptoms of adenomyosis. The pain has been so bad that I have literally thought about stabbing myself to pull out my uterus. It’s under control now with progesterone, but the drug’s side effects are ridiculous. The doctor who gave me the progesterone wanted to put in the IUD, but my original doctor recommended a hysterectomy. I battled between deciding which one to do, but I came to the conclusion that the IUD won’t guarantee a fix for the issue and the hysterectomy will.”

21.

 

“For 16 years, I complained about severe pain, loss of blood, listlessness, and extensively long periods (like 13-17 days). I kept getting told that it was normal, that I’m exaggerating, it mustn’t be that bad, I must have a low pain tolerance, etc. I tried ever single form of birth control over those 16 years.

In 2008, I had exploratory surgery since my GYN couldn’t figure out what was wrong. Turns out, I had severe ovarian torsion, which they repaired. They also found quite a bit of endometriosis and removed that as well. I still got heavy, long periods but the pain wasn’t as bad.

Then, the pain started coming back in 2015. After several ER trips, I finally got an appointment with a new GYN. I said I was tired of this crap and wanted a hysterectomy. She said that before I do something so drastic, I try using an IUD. So, I did the Mirena IUD for a year and got such bad depression from it. I wanted to kill myself, on top of the horrid pain that I would feel anytime that I had sex, along with months of constant bleeding.

This past June, My GYN agreed to do the hysterectomy. I was full of endometriosis, adhesions, and cysts. I was having bladder incontinence problems because my bladder was completely surrounded by the endometriosis. Now, I am 3 months post-operation, and so glad to be free from all of the pain and bleeding. Plus, the bonus of never having to worry about an unwanted pregnancy.”

22.

 

“Chronic patient here.

I have a rare neurological disease that causes tumors to grow on my nervous systems (and on any other type of body tissue, but the nervous system tumors are the most common). I was diagnosed at age 4. I’ve been treated by the same clinic for over 25 years, having seen the same specialist for 20 of those years. The hospital where I’m treated is more than 3 hours away, but my local hospital is affiliated with them.

I woke up one morning with severe hip pain, swelling in my thigh, and a terrible limp. I went to my small town ER where I was told I had a skin infection (The doctor just visually examined me, ran no tests, and told me it was a razor burn from shaving my bikini area). I was given an antibiotic. My disease is in my medical records, which the hospital had access to since it was the same medical facility, just at a different location.

Two days later, the entire inside of my thigh had turned purple and blue. I couldn’t walk without an excruciating pain. I went to an Express Care, which is like a step down from the ER. They immediately sent me to the ER for symptoms of a blood clot. The on-call doctor notified the ER that I was coming and demanded an ultrasound.

I arrived back at the ER where the ER doctor basically told me that she wasn’t going to order an ultrasound because it ‘wouldn’t find anything,’ was told the bruising was self-induced to get pain pills, and I was being discharged and black listed. My husband flipped out and demanded an ultrasound, threatening legal action if not.

The ignorant doctor gave me attitude but, eventually, ordered the scan. The ultrasound tech turned white as a ghost, quickly turned off the monitor, and rushed to get the doctor.

Turns out, I had a tumor the size of a 12 oz soda can growing off a major nerve in my groin. I somehow strained the muscles around it, damaging my nerve and muscle. I never received an apology, or any admission of being wrong from the doctor.

My specialist later told me that she had a lot of fun talking with the ER doctor (using heavy sarcasm.)”

23.

“Last year, I had two collapsed lungs in a two week time frame. After that I had several occasions of thinking my lungs had popped again, but the doctors always said that nothing was wrong.

Cut to May, two weeks until summer break, I get the lung collapse feeling again, but due to the past, I wait over 12 hours. Eventually, I get an x-ray and it was a collapsed lung. Not only that, but the doctors realized that all of those other instances were actually collapsed lungs.

The moral is, I should have trusted my own body, but I wound up gaslighting myself because the ER couldn’t find anything wrong with me.”

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