OK, I am a computer dummie and trying to get into this forum. I posted a few questions and have not heard back so I think I am doing something wrong. My husband has been diagnosed and neurologist wants him to go to John Hopkings--been waiting on his office for a month and just found out they do not take his insurance....not sure what to do..wait on doctor...try to go to UVA. I have a 15 yr old daughter that we need to tell her what is going on but wanted to wait to be sure...although I am pretty sure. What about genetic testing????