April 29, 2008 at 10:43 pm

I didn’t understand when you mentioned that he did not think you would need more IVIG treatments after this one, then he said he didn’t think it would go into remission again. So how is he planning to treat you if you do go downhill again? You are looking for answers that no one, not even a specialist, can answer. Because the one thing that those of us with CIDP know for sure, it is very unpredctable & every person with this illness is different. Some do go into remission, but since you have relapsed chances are you might need some kind of maintenance treatments. But on the positive side, look how long you lasted between the past two?

I understand your confusion, but do not wait until you are unable to walk before you get IVIG. Each time the myelin is damaged, the less likelihood that it will recover as well as in previous relapses. Just like with pain, one must always try to stay ahead of it. It appears as though you have the relapsing remitting type of CIDP, just feel fortunate that the IVIG works for you. I have the progressive type & nothing short of chemo wiping out my immune system even began to stop the progression of my illness. I never got back a lot of what I originally lost 6 years ago. BTW I have terrible “brain fog” & I know it is the CIDP; it gets worse with fatigue.