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mitochondrial disorders


ariella
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And yet another question, we're still working on the other half of my diagnosis. Someone on this forum mentioned she had some kind of mitochondrial disorder, which mimics myasthenia. Don't remember who it was. Any idea what kind of dr. to go to to rule it out, as the myasthenia dx still in air? Would this be consistant with my dysautonomia symptoms?

Ariella

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Hi Ariella, Your best bet is to see a genetisist and a neurologist. It is best to find soemone knowledgeable about mitochondrial disorders. The only way to truley rule out mito is a fresh muscle biopsy. Most places freeze the biopsy and send it out for testing. I know of many patients, including myself who did not get enough information from the frozen biopsy. They were not diagnosed until they had a frsh biopsy.

I recommend that you check out http://www.umdf.org/ . Look under information for patients and medical professionals. You will get a lot of information. I also recommend the support group Yahoo mitoldies. They can answer questons you may have. You will learn so much more from the patients than any of the drs.

I hope this information is helpful.

DawnA

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