megan2 Posted December 11, 2009 Report Share Posted December 11, 2009 Hi everyone,I'm going to be heading to the Cleveland Clinic next month to see Dr. Cohen for an evaluation for mitochondrial disease.I was wondering if any of you have seen him, or have ventured down this path...what have been your experiences?Thanks! Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted December 11, 2009 Report Share Posted December 11, 2009 old link regarding mito situations. hope this helps. http://dinet.ipbhost.com/index.php?showtop...ondrial+disease Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted December 12, 2009 Report Share Posted December 12, 2009 Hi Megan I went to Atlanta this September to see Dr Shoffner, I had a muscle biopsy, spinal tap and loads of blood work. I should be hearing back any day, seems like forever ago. I had looked into going to the CC but once I found out they sent all of their samples to Dr Shoffner and his group I decided to go directly there. Good luck with your tests and let us know how you do Quote Link to comment Share on other sites More sharing options...
megan2 Posted December 17, 2009 Author Report Share Posted December 17, 2009 Thanks! How did you decide to get a muscle biopsy? I've been told they're only informative 50% of the time of dysautonomia related mitochondrial disease...so I'm confused about whether I should bother getting one or not. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted December 17, 2009 Report Share Posted December 17, 2009 I didn't decide anything about the mito testing, they told me what was needed and off I went. I'll add a new post but I just got the results back and I'm positive for mitochondrial disease. At least now I have a cause for everything. Quote Link to comment Share on other sites More sharing options...
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