Patty
I have had this disease since my early 30's. I'm now 58 and have suffered siezures for years. I'm in the hospital between 5 and 6 times a year and over the last 2yrs I've been going into a coma most of the time. I have also been on a respirator and feeding tube more than once. My Dr. doesn't seem to take my case serious enough and I've told him so. As soon as I'm out of intensive care he comes loling in and ask if I'm ready to go home. He still has me on demorol every 3 hours around the clock. I have been to so many places and no one seems to help. I did have a Dr. at one time that gave me heme intravenously but he is no longer here. Does anyone have a good idea of what I should do. I feel sorry for my husband as he has to make the decisions as to have me incabated or not. He doesn't want me to have a DNR but has agreed not to keep me alive on machines for more than two weeks. As each day passes I just get more tired. Any help anyone can give will be deeply appreciated.