thegron Posted November 23, 2013 Report Share Posted November 23, 2013 Hey,How does one go about checking if they have a mitochondrial disease? Which specialist did you see and which tests did you run?Any information that you guys can provide is much appreciated.-Thegron Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 24, 2013 Report Share Posted November 24, 2013 Just attended a continuing ed. course on mito disease last week with a specialist from New Orleans. I think there are just a few docs that specialize in it in the country. This one was a geneticist. Not sure if they all are.Hopefully others with personal experience will chime in but I think the absolute test is a fresh muscle biopsy, although frozen biopsy can test for most things. Because it's a relatively new field there's a lot that's unknown and if your test comes back negative, it doesn't mean you don't have mito disease, just that you don't have one of the types that they've identified so far. Sounded like, from this doc anyway, that the treatment is largely supplements/nutritional etc but he seems to be having some success with helping his patients. According to this doctor there is "nothing" that absolutely rules out mito disease as a diagnosis.Good luck Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted November 26, 2013 Report Share Posted November 26, 2013 http://forums.dinet.org/index.php?/topic/22268-mitochondrial-disease-testing-at-mayo-clinic/?hl=%2Bmitochondrial+%2Bmayo Quote Link to comment Share on other sites More sharing options...
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