Illness is like a puzzle -- you can't get an accurate diagnosis until all the pieces are there and you have a doctor who is capable of fitting them together.
So when four separate doctors all had trouble figuring out why I, at 26 and in good health, was having severe heartburn everyday, it was just a matter of time before more symptoms started cropping up to give us a bigger picture.
That is the way with medicine, so patients must be vigilant about their own health, seeking second, third and fourth opinions if necessary, if they are not getting better under a doctor's care.
It was one Victoria doctor that gave me the determination to become my own advocate. Luckily, because if I'd stopped there at his ill advice, I might have died from a stroke or blood clot.
"See, you're anxious. That is why you have this heartburn. You should double your anxiety medication. Take two pills a day instead of one. I mean what else could it be?" he (we'll call him Dr. Jerkface) said to me when I asked for a blood panel (on the advice of my best friend who is in nursing school).
After one single test, an upper GI X-ray, I was not convinced it was nothing. I went through a list of things I'd looked up about heartburn (diabetes, Chron's disease, etc.) and told him I'd like my blood drawn to rule these things out.
"Why do you think you have all these diseases? It sounds to me like this is a mental issue, not a medical one."
In the words of Heart, if looks could kill, he'd be lying on the floor. I was shooting daggers at his face while I asked to be referred to a specialist.
"I'll give you a reference so you could see that there is nothing at all wrong with you."
I never went back to that doctor. In fact I've thought about picketing his office with a sign that says: "Dr. Jerkface's negligence almost killed me!" But I was referred to a doctor who was willing to do more tests. Even though I was adamant about blood work, the gastroenterologist wanted to rule out stomach issues first.
A duodenoscopy (endoscopy), gall bladder ultrasound, h.pylori test and $2,000 later, we still had no diagnosis. All the tests were negative. We would take a break from tests for the moment.
However, as I planned my next medical move, one Friday night I had a brain-busting headache, one of the worst I'd had in a long time. A few aspirin later, I thought that would take care of it. Unfortunately, an inflamed colon put me in the emergency room late Saturday night and I was in the hospital for the duration of the following week.
After 11 months of Nexium, numerous costly tests and lots of daily pain, they took nearly 30 vials of blood over the course of my 6-day stay at Citizens and guess what, they found something.
According to my research, only a few thousand people worldwide have been diagnosed with this disorder,which is commonly exacerbated by use of hormonal birth control (that I'd been on for nearly 12 years), Protein S Deficiency is often diagnosed after someone has a stroke or near-fatal blood clot. My inflamed colon possibly saved my life.
Rarely are men associated with this as the onset of symptoms occurs with events such as pregnancy and birth control intervention. In fact, many women usually go through several miscarriages, strokes, or deep vein thrombosis before anyone thinks to look at their Protein S.
After talking to a pediatrician, I found that colicky babies sometimes have the disorder (which I had without relief for the first year of my life), tweens and teens with it tend to have chronic headaches and bowel issues (which I had when I was that age), and many of her patients' mothers with the disorder had severe, unexplained heartburn leading up to their diagnosis. My whole life, explained in a nutshell. You can't imagine my relief!
So, take that Dr. Jerkface, who accused me of being a hypochondriac. Maybe you should think about schooling yourself in this and other blood disorders before you kill someone.
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Great point in your article. Oftentimes we have to become an advocate for ourselves at great expense. Sometimes it is something simple that the doctors should be able to fix or diagnose. For example, I had to see 4 doctors, a specialist, take 4 different antibiotics, run 100+ fever for over 2 weeks straight, and have 6 vials of blood and multiple other test done just to tell me after over 2 weeks that I have tonsillitis. Doctors either refuse to look at something complex and rare or look too much for those and forget the simple diagnosis.
March 7, 2011 at 8:53 p.m.TRYSTA: GLAD YOU PERSEVERED Or as someone said perseverated.
February 28, 2011 at 4:28 p.m.While seemingly rare, many people are just simply not diagnosed. They die from strokes or clots without it ever being discovered, or go their whole lives with complications that have no apparent explanation. I don't think my current doctor even really knows what the disorder is, but was present enough to run a panel of blood tests and saw this obscure protein was low.
With the many ailments, diseases and disorders out there, doctors can hardly know everything at all times. But to have the courtesy to be honest about that and keep vigilance over their patients' health, referring them to other doctors when necessary, that is the mark of a good human being and physician.
February 28, 2011 at 11:33 a.m.Consider yourself very fortunate. If your condition is one shared with only two thousand people in the world, it is so rare as to be unheard of by almost all practicing physicians. If this condition is mentioned at all in medical school, it would be in passing in the course of years of school and residency. That you found a physician who knew what to look for and could diagnose it is almost pure luck. You are one lucky lady.
February 26, 2011 at 3:52 p.m.@trixie50: I think you're right. Patients have to put so much time and effort into their own care because many doctors don't have time and effort to put into them. Unfortunately, instead of admitting "I don't know what's wrong with you. Let me refer you to someone else," some doctors come up with what seems like an off-the-wall answer, invalidating your feelings in the process, and just prescribes medication to get you out of their hair.
February 25, 2011 at 4:22 p.m.Thank You so much on this information! I feel alot of people are misdiagnosed. Doctors Just want to "fix" the problem and not find out why there is a problem. I believe we have to go to several Doctors to get the correct help. Sad that we do and most don't because of time, or lack of funds/insurance. Great to here you saved your life! Maybe you should picket that %$$@%%k Doctor and make it known he isn't the Best! Again Thanks for the Blog!
February 25, 2011 at 3:35 p.m.