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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

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Still Being Poked, but Optimistic

Day by Day with a Movement Disorder Posted on September 7, 2011 by DBMay 18, 2016 4

Well, I was hoping to wait until I had something definite to add, but it looks like that’s not going to happen any time soon. Since I’ve written last I’ve had two more sets of liver enzyme tests with varying results, but still high. I’ve been to the Endocrinologist, and he’s run all the thyroid tests again and done an ultrasound of my thyroid.  He is satisfied that all is normal there. The liver biopsy results came back normal. So far so good.

But, I asked at my last Gastro visit if muscle atrophy could cause the liver enzyme numbers to be high, based on some information I found on the internet. So he added a Creatine Kinase test to the orders for the liver function panel, and the CK numbers were elevated. I’m not sure yet what that means, as I’m having a routine colonoscopy this week and won’t see my Gastro again until the followup appointment for that.

I’ve decided that the variation in AST and ALT numbers I keep getting is determined by how much walking I’ve done prior to the test. When I had to walk a long way to the lab the numbers have been higher than when it was close by. I really do think all the abnormal numbers have something to do with whatever is making my walking so labored and oddly gaited.

I have a feeling I won’t get any answers until I see the Neuromuscular Movement Disorder Specialist at UAB in October. But at least we’ve ruled out several things that could have caused this weakness.

I’ve finally reached a point that I’m no longer worried about them finding some horrible something wrong with me, and I’m very thankful for that. I am not as weak as I was back in March when this all started, and I’m VERY thankful for that. I feel good enough to have made a dent in the backlog of work that accumulated when I was so very weak, and that helps my outlook, too.

I’m thankful to God that most of the scariest possibilities have been ruled out, and I’m no longer anxious about the final results of all this testing.

Posted in Tests | Tagged Creatine Kinase, difficulty walking, Endocrinologist, gait, liver biopsy, liver enzymes, MDS, Movement Disorder, Neurological Disease, thyroid, weakness | 4 Replies

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