It Was Like Having A Heart Attack Everyday…For 4 Years
“When I was 12 years old, I had a heart problem that was just starting to show. It consisted of arrhythmia and palpitations, and they only occurred when over I was exerting myself. I went to a cardiologist and was accused of faking it to get out of chores and soccer practice.
By the time I was 15, my heart was completely unreliable throughout the day, and during an attack, I would lose my sight and pass out. The same cardiologist still claimed I was faking it, saying that kids just don’t have heart conditions. When I’m 16 years old, my heart finally stopped.
Luckily, I’d passed out earlier at school and was in the nurse’s office when my heart stopped. I woke up in the hospital. I had a heart deformation that required surgery. My mother blew her lid, accusing my doctor of wanting to see me dead.
She went into his office and threw his degrees and awards off his wall, and screamed at him. The only reason she didn’t sue was to prevent assault charges. A simple echocardiography showed growth causing the electricity being pumped into my heart to go in circles. It sure wasn’t fun having heart attack simulations nearly every day for four years.
The disorder is called Wolff Parkinson-White syndrome, and it’s an extra electrical pathway between your heart’s upper and lower chambers which causes an irregular heartbeat. The eerie thing was that the extra muscle growth was shaped exactly like a sickle. After seeing Final Destination, my sister would constantly ask me if I saw anything abnormal (‘unusual coincidences’).”
No Sweat? Time To Fret
“My wife and I started to suspect that something was wrong with our son starting at age 2. He would run around all day and was an active little guy, but he’d never sweat. He also never seemed to get cold.
We live in New England and he would often take his shirt off before going to sleep, even in the winter months. These concerns were dismissed as a ‘toddlers are weird’ sort of thing by his doctor.
We later noticed that he would stop and complain about his hands or feet hurting while playing or laying in bed. These were also dismissed. We were told that the pain in his feet could be because his feet are flat or because of growing pains. We were told that it could also be attention related. The doctor said that it’s not uncommon for middle children to act out.
This continued for four years. My sister is a biologist and asked us if we ever got him checked for Fabry disease. I flat out asked the doctor if he could be tested and the doctor told us that there was no way this was Fabry, and that they weren’t going to test a kid without any genetic history of the disorder (it’s genetic) and without a classic sign (one that often doesn’t show up until adulthood, if it shows up at all).
We waited until our son was literally screaming in bed about his hands and feet feeling like they were on fire. We demanded to get him tested and he was immediately diagnosed with Fabry. It’s essentially a metabolic disorder caused by a missing enzyme.
There are many issues associated with it, but the main one is an extreme neuropathic pain in the hands and feet. The pain can be random, but with my son, it’s normally because he overheated since he lacks the ability to sweat.
He plays sports so we have to be careful. Overactivity and fevers have to be watched out for since his body can’t cool itself down. Pain can last anywhere from a couple of minutes to a couple of days.
The average age of diagnosis for this disorder is around 16, so it’s not surprising that his doctor missed it. Most doctors do since it’s a rare disorder. That was a little over a year ago, and my son is doing well now. There is no cure, but treatment allows him to live a relatively normal life just with some added pain. I couldn’t imagine making him wait until his teens to get any relief.”
“Your Son Needs To Come In NOW”
“When my brother turned 11, he was suddenly tired and lethargic all the time. He missed a lot of school and he hated missing school. My mom kept taking him into the doctor and they’d say it’s the flu, or puberty, or mono, but it would never get better.
After a few weeks of this, my mom brought him to the hospital again, yelling at his doctors that something was seriously wrong with her son and that they needed to do their jobs and figure out what it was. It was leukemia. They called the next morning just before 2 am and said, ‘The tests came back, your son needs to come in NOW. Not in the morning, right now.’
I can’t imagine what happens to a parent in that moment, when you know it’s bad because they call you in at 2 am but you don’t know why. He was in treatment for just over a year and was rediagnosed on his birthday. A few months later, he had a bone marrow transplant and was able to come home pretty quickly.
There were complications from the transplant, called graft vs. host disease (like organ rejection, but the new cells try to reject you). It attacked his musculoskeletal system, causing stiffness and some dangerous situations. This October will be eight years since the transplant, and he’s cancer-free. That boy loves to use the cancer card now, but he definitely earned the right.”
Security Was Escorting Him Out When Tragedy Struck
“My friend’s dad went to the emergency room and the doctor said he was fine after minimal examination. Her dad insisted something was wrong and said he wouldn’t leave until they ran some tests.
As he was being taken out by security, he had a brain aneurysm and died. Her family was awarded a pretty massive malpractice settlement, but they were absolutely devastated.”
Teacher Terror Left His Tummy Twisted
“When I was nine, I would get stomach aches when I went to school. My doctor insisted I was faking, but my mom insisted he take it seriously. Finally, they gave me a barium x-ray and saw I had a stomach ulcer. I had to take Maalox and drink milk at every meal and snack. I even had to get special permission to get milk from the cafeteria at morning recess.
My teacher ridiculed me for my condition. She was horrible and abusive. While I never received any of her physical abuse, there were two other boys in my class who she would hit on a regular basis.
This would have been 1980, so it wasn’t normal for teachers to be pulling hair or knocking a kid’s face into a desk like she did. Every Friday, the three of us would have to stay after school while she told us all how stupid we were.
My stomach aches didn’t get any better and the doctor accused me of some combination of faking/exaggerating/noncompliance. We literally had to save all the empty Maalox bottles to prove I really was taking my daily doses.
Today, we know that having me drink milk six, seven times a day was exacerbating things. And in retrospect, my mom never really understood how stressful it was being in that class. It wasn’t until the last few months of fourth grade, when they finally transferred me to another classroom, that I got well again.
Later, my mom told me that even she thought I’d been exaggerating when I talked about how mean the teacher was. After I’d left the honors class and moved down a level, my former teacher still ridiculed me pretty frequently when we crossed paths, but it didn’t tie my stomach up in knots.”
“A while back, my mother had been very feeling sick and tired (imagine a cold but its 100x worse) all the time. The doctor she saw multiple times kept basically blowing it off, saying she just needed some rest. But it kept getting worse.
One day I was home with her. She was in bed sleeping, and I was out in the living room watching TV. For some reason, she decided to walk out into the living room and sit in the chair across from the couch. She looked like a legit zombie, and when she sat down she could barely hold her head up. I immediately called 911.
Turned out she had pneumonia and one of her lungs was entirely full of fluid, while the other was more than halfway. She spent a few days in the hospital and fully recovered. I don’t know what made her decide to walk into the living room, but if she hadn’t done that, she likely would have died that day. All of that could have been avoided if the doctor she saw would have just paid closer attention to what was going on.”
“It’s All In Your Head!”
“When I was 16, I had a benign ovarian tumor, while also having endometriosis (tissue that normally lines the uterus grows outside). So every month, I was already in a ton of pain due to the endometriosis, plus now I had this new constant pain DAILY that prevented me from going to school or even moving. It was the tumor.
I then get referred to a pediatrician so she could handle all my reports from the multiple doctors I had seen. This lady told me she thought my pain was psychological and could be due to stress from school, home, etc.
She fully believed I was hiding something deep and personal in order to avoid school. The report clearly showed that there was a huge buildup in my body causing this pain, but she’s on another tangent.
She just had a stick up her butt the entire time as if she’s superior and I was wasting her time. She even referred me to a psychiatrist. I told her to keep her unwarranted referral to herself and go check her medical degree. Turns out, I needed surgery. Now, I get that it may be true for some people, but when I tell you I’m in pain, you can’t tell me you think it’s imaginary and completely disregard my opinion.”
Low Power Mode
“I was losing my hair, my gums bled randomly, my skin looked terrible, my muscles cramped up out of nowhere, I literally fell over once while standing on both my feet. I got horribly depressed (world felt like cardboard is the only way I can think to describe it), and all I wanted to do was eat and sleep.
Sometimes I would start talking in conversation and get jumbled midway through where words didn’t come out right, and that was the beginning of some social anxiety for me.
I went to several doctors who plainly thought I was full of it. Several of them asked me how much I drank, and one of them asked me over and over again as if he didn’t believe me when I said I didn’t. I was tested for low thyroid, cancer, rheumatoid arthritis, and some other scary things, but nothing came up. This was over a six month period.
I finally figured it out by Googling my symptoms. The search led me to a message board that suggested I find a doctor who would give me a blood test so I would know for sure. Turns out I was really low on B12, somewhere in the low 300s I think.
They went from nearly rolling their eyes at me to my face to giving me a B12 shot in the office before I left on my second visit, and prescribing sublingual B12.
I actually found out a few years later that I have a gene mutation that keeps me from methylating B vitamins. I mention it to every new doctor I see now and they always look at me like I’m a hypochondriac. Then they look it up on their laptop and kind of go, ‘Oh, okay,’ like they’re relieved I’m not making it up.”
Robbed By The Docs
“I went to emergency rooms several times over a few years and was diagnosed with ‘gastroenteritis’ every time. Then I stopped even going into the ER when I was doubled over in agony, vomiting up everything I’d eaten over the past week because I’d just get another very expensive diagnosis of ‘gastroenteritis.’ Just go home, you crybaby!
Eventually, after a month in a hospital, they noticed it was appendicitis (a perforated appendix). I would have full on ruptured appendix symptoms, but then it would ‘scab over’ with a cyst, close up again, and I would ‘get better’ for a few more months…until the time I didn’t.
I was put on steroids and told it might be Crohn’s disease. Eventually, after drinking yet another gallon of barium, an outpatient X-ray showed it was appendicitis.
Ultimately, because I was taken to the ‘wrong’ doctor who sent me to an ‘out of network’ hospital for the extended stay, my savings got wiped out. Even all of those x-rays were out of my pocket. I asked about the bill that I got a couple of months after the ordeal, and was told, ‘Oh, you should have gone to Kaiser!’ Lucky me.
Anyway, I went to a Kaiser hospital, feeling fine, and left the very next day, with a huge new scar, and feeling like I’d been kicked in the guts. Then I went DIRECTLY back to work, because I couldn’t afford not to. Yay, American medical care!”
A Dangeous Nap
“I fell asleep on a heating pad and made the mistake of going to an urgent care downtown when I had severe burns all down one side of my back. It hurt too much to move, too much for the doctor to even touch, clean, or dress the burn, so they didn’t.
Also, I was using the heating pad for period cramps, which are incredibly bad. I have to call out of work because I’m so incapacitated, writhing around in agony, crying, and trying not to scream. The pain gets so bad that I oftentimes will get worked up into a near panic attack because none of the medicine is working, baths aren’t working, heating pads aren’t working, and I am in waves of excruciating pain.
Anyway, at the urgent care, they measured the size of my hands and compared them to the burn to determine whether or not it was self-inflicted. They prescribed me Neosporin and ibuprofen and sent me home with undressed burns all down my back.
I went to my dermatologist the next day, who took one look and prescribed me a round of antibiotics and codeine tablets as I had large SEVERE SECOND DEGREE BURNS running along a good portion of my back. He also cleaned and dressed my back as gently as he could.
I guess people will cook themselves for pills, but in the future, I’m getting my medical care from places where people don’t do that as frequently.”
The Ankle Tangle
“I was traveling abroad for the first time and was rushing to catch a bus by running down the stairs in my hostel instead of taking the elevator. I tripped on the very last step and immediately had this blinding pain in my ankle. I almost blacked out as I forced myself to walk to the hostel kitchen, drank as much water as I could to stay conscious and asked the hostel staff to call me a taxi so I could get to an ER as quickly as possible. It was awful and I knew something was seriously wrong, but nothing showed up on the x-ray and the bruising hadn’t started yet so the hospital staff just sent me on my way saying I had sprained my ankle. I asked if they had anything they could give me to help me walk, but since it was just a sprained ankle according to them, I got a bandage and that was that.
Since this was at the beginning of my trip, I spent the next week walking on my busted ankle. I spent time in a hostel where my room was on the fourth floor of a building with no elevators, and then to top it off, I had to try and run across an airport to catch my flight…which didn’t happen since I physically couldn’t make it there fast enough.
Once I got back to the States, my mom convinced me to go to another doctor because my ankle looked awful, and honestly it didn’t take much convincing. Again, the x-ray didn’t show anything, but when I explained the pain to the doctor he told me that I have a stress fracture in addition to the terrible sprain! I had been walking around on a fractured ankle for over a week for six plus miles a day! I ended up having to wear a walking boot for like six weeks afterwards while it healed during the holidays, but I decorated my boot to be festive so it probably could have been worse.”
Labeled As A Junkie For Her Vertigo
“I woke up one morning with severe vertigo. Like, couldn’t move my head without puking, vertigo. We waited six hours before calling an ambulance.
By that time, thanks to those symptoms of stroke ads, I was very concerned I’d had one… or was having some sort of terrible reaction to my medication: an opiate I had recently been put on for hip deformities. So I had NOT taken my morning pill.
I informed EMS of all of the above, stuck my bottle of meds in my purse, and we were off to the hospital…where I’m promptly parked in a hallway for nearly 24 hours. I couldn’t move. I was urinating on myself. I wasn’t even seen by triage, they just took a report from EMS.
20 or so hours in, I managed to flag down a passing doctor and asked why I wasn’t being seen. He looked at my chart and bark-sneered, ‘You’re not getting any meds from us. You’re wasting everyone’s time!’
These meds? This nearly full bottle of pills with three extra because I haven’t even taken them despite how much this gurney is hurting me? What the heck are you talking about? If my meds are causing this, why would I want MORE?!
So I ‘got up,’ meaning I slithered to the floor. My eyeballs were going crazy, and I vomited on the floor instantaneously. I could barely control my body, and I literally crawled out of the waiting room. I went right past two cops who were super freaked out while the doctor chased me, saying, ‘You could be seriously ill! We need to do tests! This could be a stroke!’
As I sobbed, I said, ‘I KNOW, THAT’S WHY I CAME HERE. WHAT DOES THAT MAKE YOU, SHERLOCK HOLMES? I’M GOING HOME!’
Two days later, I finally got an appointment with my general practitioner, and my husband and a buddy had to carry me in. He was LIVID. It turned out to be ear stones, not a stroke. It was my first, and worst, attack of vertigo. That one lasted two weeks. I hate the Epley maneuver.
Nothing came of it. But I know now that because I am a chronic pain patient, I will never be able to use emergency medical services. I will forever and only be a pill-seeking junkie piece of scum to them, no matter how well documented my compliance is.”
He Didn’t Want To Solve The Actual Problem
“I threw out my back and since my normal doctor doesn’t work weekends, I just went to the ER. I was in a lot of pain and needed a doctor’s note to be excused from work the next day. Otherwise, I wouldn’t have bothered going to ER and waited until my doctor was open again.
I was a practicing massage therapist at the time, so I was really big into massage, chiropractics, physical therapy, etc, to actually fix the problem as opposed to just medicating the issue. I wanted the ER doctor to x-ray my back and look for bulging or otherwise compromised discs, or see if my sacrum was out of place, or if a nerve was impinged, or anything else that could cause my pain.
After explaining all that to him, he looked me square in the face and told me anyone who comes to the ER for back pain is probably a pain pill addict, and then proceeded to write me a pain pill prescription and send me on my way without examining my back.
I never went back to a US doctor for my back pain. Fortunately, shortly thereafter, I had a job that took me to Germany, and their healthcare system is much better and I was able to get a doctor to check out my back and get into physical therapy.”
Shouldn’t You Know This?
“I was about six weeks pregnant when I miscarried. The ER doctor passed it off as me being an irrational pregnant woman and that this was ‘totally normal.’ My obstetrician told me that it would just pass on its own a few days later when the miscarriage was confirmed.
The second ER doctor that I saw the following weekend made me wait for 10 hours before giving me any pain medicine or deciding that I needed an emergency dilation and curettage before I bled to death, because he wanted an ultrasound performed to make sure, and I quote, ‘that we don’t hurt the baby.’
Like, I’m bleeding to death over here and this dude wants to do an ultrasound to make sure I’m actually miscarrying, even though it had previously been confirmed and I am literally hemorrhaging blood and having full-blown labor pains.
The runner-up would be the three urgent care doctors, my GP, and an ER doctor all missing that I had a kidney stone because I wasn’t acting like someone with a kidney stone.”