Sunday, February 12, 2012

Random Thoughts - Waiting for Answers

After so many false alarms with my health, especially in the last few years, I'm just not sure how to react any more to possible new diagnoses. I feel like I've been on a bunch of wild goose chases. 

A few years ago, a GI doctor suspected Celiac Disease and tested me for it.  The whole time I was waiting for the results to come back, I was mourning the potential loss of gluten and all that is good in the world. The test came out negative, indicating I did not have the disease.  (I ended up going on a gluten-free diet about two years later anyway.)

A couple years ago (has it really been THAT long?) I was misdiagnosed with epilepsy and put on anticonvulsant drugs that nearly killed me.  I spent a year believing I had epilepsy.  A second opinion from an epilepsy specialist confirmed that I did NOT have epilepsy and never had any symptoms that would indicate that I had it.  I am still emotionally scarred from this experience. 

A few months ago, I saw a dermatologist because I had been losing my hair like crazy.  She did some blood work, and my ANA came up positive.  ANA is an indicator of autoimmune diseases such as lupus.  The dermatologist suspected lupus or another connective tissues disease and referred me to another dermatologist in her practice who specialized in autoimmune diseases.

I spent weeks worrying that I had lupus until all the follow up tests came back negative.  I sought a second opinion (or would it really be a third opinion?) from a rheumatologist who specializes in autoimmune diseases. who confirmed I do not have lupus or any other autoimmune disease even though I have an elevated ANA.  It's important to note that this rheumatologist is the one who suspected myopathy and suggested I see a neurologist. 

Now I've seen a neuromuscular disease specialist (neurologist) who suspects mitochondrial myopathy.  From my very first visit with her to the EMG testing and follow up visit, she has been  consistent in her suspicions about my potential health problem, honest about the limitations of testing, and eloquent in the way she has explained things to me.  She acknowledges that my problems may be a result of my CFS, yet they may be a result of an actual myopathy. 

I like her because she comes across as extremely knowledgeable but very accessible.  She speaks to me as an intelligent human being (I've seen so many doctors who treat me like an idiot) and uses medical terminology, but explains with great patience if I need clarification or don't understand a term she has used.  She is compassionate yet professional. If only all doctors could be like her. 

Still, I'm not sure how to feel about this new path I'm headed down.  I have so many questions and concerns, but I'm trying to keep a lid on them because there is no use hypothesizing about the "what-if's" if I don't have a diagnosis.  I feel as if I need to put emotions on hold because all the previous times I've worried about a possible diagnosis, it turned out that I had merely wasted energy worrying for nothing.

It will probably be a couple of months before I get any answers.  It's likely my biopsy appointment won't be for another couple of weeks (I have to call Monday to schedule), and the doctor said it would take up to three to four weeks (or was it two to three?) for them to do a full analysis.

Oh, well.  There's really nothing I can do now but think happy thoughts, live my life, and wait.

I hate waiting!

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