I am only a month from the first neuromuscular specialist appointment. He started me on high dose pregnisone. I was already on mestinon. I am tentatively schedule for IVIG next week. I am sure he will discuss it at the next visit. I am just anxious. I have been feeling so bad for so long, I just want relief soon. It took me 2 years to get a diagnosis, I just don't want to waste any more time.

thanks
kathie

Hi, Sorry it took so long for you to get a diagnosis. Same thing here, took me I think a year and a half or more. So much has gone on just forgot. I know for me the IVIG made me get sick, and it worked for a few days on general weakness but not my bulbar weakness. I know within a week after I couldn't lift my head again. So they did the plasmapheresis. That worked, I could lift my head but my bulbar...swallowing was still weak and my talking it depended on the time. I ended up doing 6 plasma's before my swallowing came back but I still have issues speaking clearly. In the end 10 plasma's helped even with them speaking issues daily. I hope the IVIG works for you, just drink a lot of water before you have it. Read up on it too, through the net. It helps me a lot when something new is going to be done. Having Faith In God Helps the most I believe.

Got to ask. How long do the plasmapheresis usually last as in after you have ten of them? Because my last plasma was on the 8th and I felt great for a while now I'm feeling a bit weaker. Maybe I'm trying to do too much? I def ain't getting much sleep cuz of prednisone but shouldn't the prednisone help that weakness a bit? Waiting for azathioprin to kick in too. Been on that since may 9th so that's not even kicked in. Too much wait and see and get weak. :(