Hi, My daughter was recently diagnosed with MELAS. She is 18 and is currently attending college. Her health is pretty good. She has never had a seizure or been hospitalized. Her main symptoms are fatique and muscle weakness, oh and ADD issues. Her doctors can't really tell us what her outcome will be. And I worry that she will get overtired and start to decline.
I have two siblings who died from complications of MELAS. One was 15, the other was 30. The younger had more muscle weakness and the older seizure problems. Anyone know a good doctor out there or just some advise. It is hard trying to give my daughter a life and not worrying about the future, if you know what I mean. Well, I have never joined one of these discussion things, but could use some support from people in the know with MELAS.