Discussions By Condition: I cannot get a diagnosis.

Is this malpractice? Help, I need opinions QUICK!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: TenseBulla2
  • June 19, 2010
  • 01:45 AM

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?
:confused:

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.
Right?
Isn't that, um, malpractice??

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7 Replies:

  • For sure the test results should have been looked at, they were likely even signed off by the doctor. I would go to the appointment calm and with all of your thoughts gathered and let them know that you are very serious and not just a "hot head" and you expect to get some answers. At the end of the conversation I would maybe even ask to get the office manager involved and ask to be reimbursed for all of the payments you continued to make to them after the lab work was done and the diagnosis missed. It only seems fair for them to pay for everything, in my opinion!
    Anonymous 42789 Replies Flag this Response
  • 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. sorry im going to sound harsh here. i think you are partly to blame too. By your post you never asked about your test results!! (hence they ended up being forgotten about). You then stopped going back hence it wasnt picked up then years later. Anyone who dont hear about their test results should at least ask.. dont just assume it's been seen and you will be told. Doctors have 100s of patients and cant be expected to keep track of everyone all the time so you need to take some responsiblity for your part of it too. One dont even know if all the tests did get done unless one asks. (at times there is reasons why tests fail at the lab...so then dont then even get done). Most people will make an appointment to get their results unless you have a surgery in which the results can be given to you over the front desk (i often ask for copies of my results and get them without even seeing the doctor, but it could work differently where you live). You need to be proactive some in your own health. It's very unfortunate.. but it appears to me that you've also made some mistakes with this.
    taniaaust1 2267 Replies Flag this Response
  • Anyone who dont hear about their test results should at least ask.. dont just assume it's been seen and you will be told..I should have clarified: I did request my test results.It was a bit of a pain, but I finally got 22 pages of stuff that I gamely pored through, but didn't really understand. Clearly. :rolleyes: (They use a lot of abbreviations and jargon, so it's hard to even figure out what the tests are, much less whether the results are okay.) I managed to decipher a lot of it with the help of my trusty medical dictionary and the internet, but I totally missed that positive result (or failed to understand it; same difference!).At any rate, my doctor knows my history— including my weight loss and queasiness— and she never followed up either. And how come no call (to my primary, at least) from the rheumatologist, who actually ordered the test? It was obvious that she'd never seen those results before that moment. And that's the part I don't understand. An asymptomatic ulcer (whether I actually have one or not) can kill you. So it seems like those results should have been kind of a big deal to... well, somebody. It's like they just erred on the side of "whatever."
    TenseBulla2 10 Replies Flag this Response
  • sorry im going to sound harsh here. i think you are partly to blame too. By your post you never asked about your test results!! (hence they ended up being forgotten about). You then stopped going back hence it wasnt picked up then years later.Thanks for the reply, taniaaust1!To clarify, I did request my test results after a few months with no word. It wasn't easy to get (for some reason), but I finally got 22 pages (!) of stuff that was so abbreviated and jargonized that I could barely figure it out, even with the help of my medical dictionary and the internet. Shrug. I obviously didn't understand as completely as I thought! :rolleyes:, and I didn't press it because nobody contacted me.And that's my real problem.Even if I hadn't gone after those results, the point is, nobody contacted me with this positive result.Not my own doctor (who knows my my medical history, including the nausea and weight loss). And not the rheumatologist, who actually ordered the tests!? That, to me, is the really weird part. My doctor didn't even know about it for three years. (I have to wonder if the rheumatologist ever got the results— of the tests he personally ordered!— at all. Because if he had, surely he would have called the referring primary care physician, right?) Meanwhile, I'm now made to understand that an asymptomatic ulcer can kill you quite suddenly. Whether I actually have one or not (not tested!), it seems like that H. pylori result should have raised a flag with... well, somebody. (You know, somebody trained to actually understand it! ;))
    TenseBulla2 10 Replies Flag this Response
  • Grr. This is my third attempt to reply to this; let's see if this works:@taniaaust1:Thanks for your reply.To clarify, I did request my results after about a month with no word.For whatever reason, they were quite hard to get. I finally got 22 pages (!) of abbreviations and jargon I could barely comprehend, which I pored through it as best I could (with the help of my medical dictionary and the internet). I spent days on it. But I clearly didn't understand it as completely as I thought, because I totally missed (or failed to understand; same difference) that positive H. pylori result. What can I say, I'm not a doctor! :rolleyes:At any rate, my primary knew about my history (including my weight loss and nausea), and she never followed up on the results. It seems the rheumatologist— who personally ordered the tests— never contacted her with the results either. I find that bizarre. In fact, I have to wonder if he ever saw the results at all— if he had, surely he would have contacted my primary? But he clearly did not contact her, because she had never seen them. And the thing is, when my primary saw that result, she was immediately alarmed. I've never seen her so animated! Apparently (she said), some people don't feel pain from ulcers. Then they end up in the ICU with a hole burned right through their stomachs— a potentially fatal situation. So it seems like that super-high H. pylori result should have raised a flag with... well, somebody.
    TenseBulla2 10 Replies Flag this Response
  • Moderators,Oops, I triple-posted.Please delete my first two replies above (at 4:56AM and 5:31AM).(And I guess you should delete this one too!)Thanks,TenseBulla2
    TenseBulla2 10 Replies Flag this Response
  • Thanks for clarifying.. and whoops to all the posts lol. Sounds like your doctor may not even have known the rhemy ordered the test.. and the rhemy may of believed that your doctor would give you the results if you didnt have a follow up appointment with rhemy doc. So it sounds like just a communication error so not sure how a malpractice suit would go. Something else which may of happened.. i know when many tests have been ordered and ive had them.. sometimes they dont all go from the lab and get to my doctors at the same time. Your doctor may of gone throu the test results saw those were normal (and not realise there was more coming and not even knowing about that other test.. one can see how a mistake could be made). It's certainly worth getting a lawyers opinion over thou seeing it affected you severely. Best luck.
    taniaaust1 2267 Replies Flag this Response
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