Reply To: IVIG/treatment and symptoms

Bny, you mentioned calling doc when you feel weakness. Once you feel it, the demylienation has started long before that. That is why it is important to stay on top. Regarding the muscle atrophy, if the demylienation was stopped with enough ivig or what ever protocol may work best for you, the message from the brain to make the nerves respond in the hand would in turn work the muscles. Just a simple way to explain it. But essentially it sounds like you are not having things completeley halted. As well, the hands will be the last to repair. The repair starts from the feet up, a mm a day. But if another relapse or the last relapse has not completely been stopped the healing does not start. Hence the continuous fatigue. Ok well I guess I am going to be whinny, so forwarned is fair warned. The oncologist appointment did not go so good. I actually was hoping I was just being an overcautious hypochondriac, but as soon as he looked at the area, he said oh yes I see and got out the vinegar solution and the “suspicious” areas were visible. Scientifically speaking it is pretty amazing how the vinegar has the chemical reaction with the cancerous cell change. So, he took two nickel sized biopsies and said make an appointment for two weeks so we can discuss what we are going to do next. Nice way to leave me hanging, so we can discuss another big surgery because you already know the margins are not going to be clean again or come back in two weeks and we will discuss the results whatever they may be. He didn’t use the verbage discuss the results he said talk about what we were going to do. I didn’t really feel like asking and I was already crying like a big baby because all I could think about is if I die, who will insure that My sons will have someone manage their illnesses? My husband is highly intellectual scientificlly but from an engineering point of view, not medically. He has no clue about either kids illness’s. Not to mention the area hurts like ….. not an easy place to heal. Ok I’m done whinning.