myopathy with tubular agregates

[Guest guest]

Joe,

I don't really know a lot on the subject, except that I have a

friend that has two children (now adult) that have muscle problems.

After muscle biopseys they were both diagnosed as having 'tubular

aggregate myopathy'. I don't have a mito diagnosis yet. nor have I

had a muscle biopsey. I am just getting started, but one day when I

was having trouble walking, she was over and exclaimed " that is just

how my son walks when his legs go out. " We compared notes and I

have a lot of the same symptoms as her children. They were not

given much information either. She is frustrated because they

couldn't give her a prognosis or anything. If you find any

information that might help my friend I would appreciate it if you

would pass it on to me. I will do the same for you. I'll check

with my friend, but I could probably get you some e-mail addresses

so you could correspond with Nolan and Audra if you would like to.

Joanne