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Mitochondrial Myopathy?

Posted Feb 08 2012 12:00am
I saw the neurologist who specializes in neuromuscular diseases about a week and a half ago.   I was impressed that she took such an extremely thorough medical history.  She was very interested in my early health history and early manifestation of CFIDS.  She did a full exam, including basic strength tests of my arms, legs, and neck muscles where I had to push or pull against her arms.  

At the end of the exam, she said she did not think that I had metabolic myopathy, but she DID suspect mitochondrial myopathy.

Mitochondrial myopathy

I told her I'd always assumed my muscle weakness was from ME/CFS. She said it is entirely possible that it is CFS and not mitochondrial myopathy, but she wanted to do some tests to be sure.  She ordered a bunch of blood work and an electromyogram (EMG) and nerve conduction study. 

It's funny that she mentioned mitochondrial myopathy because I began wondering if I should get tested for mitochondrial disease since the end of 2011.  I've read that one of the symptoms of mitochondrial disease (especially in adults) is CFS-like symptoms.  Learn more about mitochondrial disease in adults

There are also some doctors and researchers that believe ME/CFS is a form of mitochondrial disease, or at least involves mitochondrial dysfunction. 
  • Dr. Lucy Dechene: Mitochondrial Dysfunction, Post-Exertional Malaise, and CFS/ME 
  • Dr. Sarah Myhill: CFS - The Central Cause: Mitochondrial Failure
  • Dr. David Bell: ME/CFS as a Mitochondrial Disease
  • Columbia University Clinical Trial: CFS: A Presumptive Mitochondrial Disorder
  • I had the EMG two days after my initial appointment with the neurologist.  Let me say that the nerve conduction study and EMG were just about the most unpleasant medical procedures I've ever had... and I've had colonoscopies, a lumbar puncture, and quite a few "annual exams." 

    Getting shocked repeatedly followed by the repeated insertion of long needles into various muscles throughout my body is not my idea of a good time.  What's worse -- I had to move and contract my muscles with the needle IN me!  Ugh.  I was physically wiped out for over a week after the tests. 

    I'm getting my results this Friday.  Regardless of the results, I know I will be seeking a second opinion.  As I've mentioned previously, ever since my MISdiagnosis of epilepsy, I vowed to always seek a second opinion when it comes to major conditions -- either to confirm that I do or confirm that I don't have whatever I'm supposed to have (or not have).  I recently gained some peace of mind after seeing the rheumatologist who confirmed I do not have lupus. 

    I will be seeing one of the leading experts in mitochondrial disease in March.  I actually made this appointment back in November or December when I first thought I wanted to get tested.  Interestingly, I did not mention mitochondrial disease to the neurologist I'm seeing now because I wanted to get her objective opinion of what is wrong with me. 

    I'll try not to wait too long after my appointment Friday before I post an update. 

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