medical research

Jo

Sorry, first time I've tried this, and didn't quite understand how it works. This sounds very similar to something I have which has bee loosely defined as cerebella atrophy and ataxia with complex metabolic disease. I've found the discussion here very interesting as I've basically been also put in the "too hard basket" as the specialists don't know what else to do or try. There's also some sort of brain tumour/lesion which they have openly admitted they'd like to operate to find out what that is, however the risk of the various other co-morbidities outweighs doing the brain surgery as they might make things worse (he referred to epilepsy as being the most likely thing that they would add to the equation, but there was equal risk of brain damage) and there's an equal chance if it being benign. So for me it's a case of "let sleeping dogs like" and now have annual MRIs of the brain. I am sorry for you and your son, and do totally relate to your situation. I shall raise the term Spina Cerebella Ataxia with my specialist when I next see him and see if he has any leads that he can follow.