You poor thing... It sounds awful!
I'm on the case at this end and will post anything I find out on this site! I dont want 'my Angel' to go through all this, so I am doing all I can to help him early on, he is just 37!!!
We are looking into a BMT for the future-to keep his options open. Have a look on the City of hope website, then look at the story about Julius Dix, you might get some ideas there?
Good luck with your research and lets both hunt down a safe way of staving off this dreadful thing!
Hey theres, nothing like Team Work!!!!