For the last 3 years I've had to wait on doctors, and/or test results. There's nothing about the process that surprises me anymore. And, there's nothing that surprises me about my reaction to these processes. This issue, for me, is that I have a problem with delayed gratification. That being said, there are times when the waiting comes with an (UN)healthy dose of anxiety. ALL anxiety is unhealthy, btw. And yet it happens, all the same.
Like now.
Having been told by my doctor/specialist that have a form of Myositis (of which type is yet to be determined) has left me with a LOT of questions: Will he say it is 100%? If so, what type does he think I have? What tests come next?
IF this is really what I have I'm certain it's NOT Dermatomyositis (DM). It could be Polymyositis (PM), and is less likely to be Inclusion-Body Myositis (IBM). No matter what I 'think' I know, I have yet to be looked in the eye and be told, definitively. I need that. To be told definitively.
The other part of this is the possibility of Autoimmune Hepatitis and Duodenal Ulcer. The latter.. I totally wouldn't be surprised at, due to symptoms. I'm already on treatment for that, even prior to having my EGD etc. Those will be done in a little over 3 weeks. But of all the possibilities and near probabilities, believe it or not, the Myositis one worries me the most. For good reason. I know if it turns out to be the case, then it would certainly explain a lot of what's going on with me.
Yes, yes. I know I'm somewhat repeating myself here. But unless you know what this means, what these issues (diseases/disorders) actually are and what they do, then you couldn't possibly understand why I'm caught in this loop of questions.
So I called for my lab results yesterday, in hopes they would have come back by now, and they told me it would be next week. Okay. I can understand that. But the waiting STILL SUCKS just the same.
I really want to know what my CK/CPK results are. They are often VERY telling with regards to obtaining a diagnosis of Myositis, although the best confirmation is muscle biopsy. Even so, as labs are concerned, some people have elevated Aldolase (like me) and normal levels of CK/CPK. I'm just sitting here wondering WHERE I fall into all of that, because I've had the Aldolase test, but not the CP/CPK. *sigh*
And there's the Anti-JO test. This tells the likelihood of having pulmonary involvement. THAT is one of which I hope comes out negative, because the prognosis in the presence of a positive Anti-JO isn't very good. At all. But, at least this isn't always the case with people who have Myositis, so it's not that common.
There's a part of me that keeps thinking... Maybe this is all just transient. Maybe my labs were all off for a reason OTHER than some crazy, autoimmune condition like Myositis. Maybe this re-test of certain levels (Aldolase, AST, ALT, and Alkaline phosphate) will show that they're now NORMAL! Maybe all the other additional tests will confirm that it's not a chronic condition, and that it was just some fluke that has since resolved itself.
Thinking and hoping. But even if it was simply something transient, then we are back to square one with these horrible symptoms (outside of the ones that may be due to ulcer. Ulcers can heal.)
Symptom-wise---I'm a poster child for Myositis...
Guess I'll wait till the jury returns with a verdict. Despite the specialist, whom I will refer to now as "Dr. V.," telling me "You have Myositis," maybe there's still room for error. Even a doctor who got his degree at Johns Hopkins can be wrong sometimes. Right?
I hate these horrible symptoms and would very much like to get to the bottom of things, FINALLY, so we can begin treatment, and so I can move on and forward.
In the meantime...the support network is non-existent. So how does one deal with all of this without a human being to talk to, understand, listen, or just give a shit? I may very well discover the answer to that via experience....
On to PART 2.... "And who gives a shit?"
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