I have been following you all along and had a question. You have probably mentioned this before, but maybe I missed it. Have you done plasmapheresis treatments. The IVIG did not work for me at all, but that did.
Best of luck
FREDH

Hi Fred,

We have not tried plasmapheresis treatments yet. I was doing well with IVIG treatments until recently. I don't know why I am not responding as well. I have wondered about plasmapheresis also.

Thanks, and take care,
Erin

I just thought I'd post a short update. There is a chance they might do a muscle biopsy at the University hospital. I would have to go for another appointment to be evaluated. The neuromuscular specialist is not sure I would be eligible for the test because my breathing function tests were so bad on the last visit. He is also not sure the test would provide any useful results. I think it is worth trying, although I would have to qualify medically for the procedure.

Meanwhile, I'm not doing that well, and I think I may end up in the hospital this week. My local doctors are discussing what to do and I will be in touch with them tomorrow. (sigh)

Sending good wishes to everyone out there who deals with all of this on an ongoing basis. Keep on keeping on!

Take care,
Erin

X2 same here for myself, I'm on a weekly Plasma Exchange/Apheresis now for the last 18 months, 78th exchange so far and keeps me a float, I was at one time doing a double wamie Plasme a.m. then IVIG p.m.and didn't see much improvement, IIVIG wasn't very eeffective so I stopped doing them, plasma exchange is much more effective but only lasts 6 to 7 days Max...I'm also on Imuran that took 8 mouths to kick in and was finally able to start weaning off Prednisone and that another story! I also take Mestanon.