Sorry in advance for the length. (And thanks in advance for reading/replying!)
I could take up a page with the symptoms of my Mystery Illness, but the major ones are mouth ulcers, blistering skin and massive fatigue. It comes in "flares" that have gotten steadily worse. I started seeing my current doctor about it about 13 years ago (when I was about 20), and I still have no diagnosis. She orders tests, or sends me on referrals, but in the end, she always tells me everything's normal. Obviously it's not, but she's not very... proactive. If a test comes back normal, she's done. (Until I'm back in there once again, going, "Nope, sorry. I'm still sick.")
I tend to be pretty meek in the doctor's office, but over time, I've become more and more convinced that what I have is autoimmune (I have several reasons for thinking this— including the fact that only one thing has provided any relief whatsoever, and that thing is Benadryl), and I've mentioned the possibility several times. I've said, "I feel like I'm having a constant low-grade allergic reaction. When I have a flare-up, I feel "itchy" all over— on the inside." She pretty much just shrugged. I asked her to test to rule it out (c'mon, humor me!), but that never got done.
In 2005, I suddenly lost 14lbs in about a month. I'm not easily scared, but this freaked me out, because I've been exactly 144lbs since puberty. Plus, I began to feel sick after eating. As soon as I was done, I'd strongly feel like I was about to throw up. The feeling would pass in a few minutes. Couple hours later, I'd be super hungry (to the point of getting a low-blood-sugar headache). This all seemed significant, so at my next annual, I mentioned it. She ran some tests and told me I was fine. I didn't bring it up again (why bother :(). I eat constantly, but I still can't gain that weight back.
Around 2006, the flares got much worse. Really severe, and they'd last for weeks— even months— during which time, my joints would ache badly, especially the big ones (shoulders, hips, knees). (So this is what arthritis is like! It sucks!) After six months or so, I mentioned it. Since the skin blisters tend to show up around joints too, she sent me to a rheumatologist. This was early 2007. He took gallons of blood and ran dozens of tests. I never heard anything, so I figured they were all normal/inconclusive. Demoralized and broke, I gave up. I didn't go to the doctor for 3 years.
Okay, cut to the present.
In April 2010, I went in for a gyno checkup. She asked how I was, and I broke up crying. I said, "Not good! After all these years, my problem has only gotten worse. I've spent everything I had on tests, RXs and lost wages. I had to drop out of school; I lost my entire 20s. We have to get to the bottom of this." So she pulls out my file to refresh herself on the last round of tests (from 2007)— and with obvious surprise, exclaims that I'm showing 6x the level of H. pylori that would constitute an infection, and that with results like that and the other risk factors I have (news to me), I almost certainly have an asymptomatic gastric ulcer, and have probably had it for years.
Friends, I almost did a dance. I was so happy to finally have a test result that showed SOMETHING— Surely this is what my body was trying to fight off! Maybe now I'll gain my weight back! I don't have to stock up on Benadryl anymore!!!— that I was all the way out in the parking lot before it hit me: Hey. Wait a second. She had never seen those test results before. Those 3 year old test results. :eek: Remember all those times I said I felt like I was having a constant low-grade immune reaction? Gee, maybe it was a reaction to the high-grade bacterial infection I'd been carrying for, apparently, several years??? :mad:
Several friends have told me I should sue. I won't, but I'm pretty angry. Something went very wrong there. I've decided to quit this entire medical group, for my own physical and financial safety. I angrily made an appointment for this coming Monday, at which I intend to Make A Scene. I'm going to demand an explanation, and if I don't get one (I doubt there is one), file a complaint with the state medical board.
Or... am I crazy?
Before I go off half-cocked, am I right to be angry, or should I "slow my roll"?
I mean, to not even check my test results? For years?
That... can't be right.
Isn't that, um, malpractice??
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