This about sums up my situation. I saw one of the top neuro muscular specialists in the world and she flat out said to me, "Nobody wants to hear this, but I have to be honest with you. There is no cure and there isn't much hope for one. Since this is such a rare condition there is no money in trying to find a cure. All we can do is treat your symptoms and try to help with pain management. Beyond that just hope it progresses slowly."