Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 I know that back a couple of years ago there was a lot of talk about Athena's results. They tended to generalize and almost always use the same words to give all results, so this could be part of the problem. All that to say, that if you do decide to do another biopsy, I would definitely push for a fresh biopsy. There seems to be some confusion about fresh on the list...Fresh does not mean that it was taken from a person fresh...it has something to do about when the results are read. Only two places do genuine fresh biopsies...Shoffner and Cohen/Atlanta and Cleveland. I would question your docs a little more about the differences in treatments and services if they had an identified type of mito. I know Cohen and Shoffner said at the conference that if you had ten kids with Complex I for example, in the same room, their disease courses would all look different. So I would be skeptical to think that even if they did know the type, that it would change the management. The management and only treatment options for mito at this point is the cocktail and system management. deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
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