Guest guest Posted July 9, 1999 Report Share Posted July 9, 1999 Janice faxed us today Dr. Shoffner's summary of 's muscle biopsy and he has diagnosed him with Complex I. The full report will follow although he is still running some tests. After 11 years of looking for answers and insisting to many clinicians that did not fit the mold for " just epilepsy " , this is a bittersweet moment for us. To finally know you aren't crazy - that there really is " something " is a relief, I suppose; on the other hand, another vast unknown now confronts us and once again, we have so much to learn. I've been reading here for sometime but have not really absorbed as much as I wish I had. I've focused so long, and so much, on seizures - with odd, unexplained kidney, GI, weird labs & symptoms tossed in along the way - I'm not sure if I have the energy to take this on! I certainly don't know what to begin to ask! I suppose top in my mind at the moment is the connection between Complex I and Leigh's............I think I read that Complex I, among other mito disorders, sometimes leads to Leigh's? If so, does that happen at any given time? The summary from Dr. Shoffner did not mention Leigh's per se - I just know I've read of some connection. Janice was mailing the full report today. I know reading it will be the equivalent of me attempting to read chinese. If any one has any thoughts on how one tired, sad, but persistent mito-ignorant mom can begin, I'd love the advice! Thanks so much! Featherstone, mom to , 11 Quote Link to comment Share on other sites More sharing options...
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