March 1, 2009 at 6:46 am

I haven’t been on here in awhile, but I was wondering if anyone else here gets a combination of plasmapheresis & IVIG. I’ve been dealing with CIDP since 1/1/05. I get paralyzed from the throat down if I don’t get plasmapheresis every thursday and IVIG every friday. Before when I was just getting the pheresis or the IVIG, I had severe weakness, numbness & vision problems. I thought the damage was permanent because it was so severe. However, after being on the combo treatment for an extended period without interruption, everything seems to be firing fine. We did try to go to every other week several times over the past two years, but I immediately get paralyzed & the numbness, weakness, etc. comes right back like it was never gone. Even though some of my doctors thought my nerves were damaged permanently & even though several thought there was no way to get the CIDP to a manageable state, they were wrong. What that showed me was that with the right doctor & the right treatment, there is reason to hope.