It can get better

Hello AllyinCali,

Yes, CIDP can be effectively treated so that one can live an almost normal life. I know, because I do. I work full time as a chemist, volunteer at my church, and do most of the other normal things in life. I walk a bit slower than I used to, along a somewhat zig-zag path, but most people would never know I have a disease. You need to remember that web-based support groups tend to draw those with bad cases, so what you read here is probably not representative of typical outcomes.

At this point, I would give the IVIg some time to work its magic. It may take a few months to improve to nearly normal walking. The fact that you improved and then relapsed suggests that IVIg is effective, but that you will need it for the next while. You have become part of an experiment, one in which your neurologist and you will change doses and frequency. You may find that you need to add other drugs as well.

To answer your question about getting worse over time: it is hard to say and it depends on the person. CIDP is most likely not the disease that will kill you in the end (although some do die of complications and rare variants that harm the heart nerves), but since our nerves tend to give out as we get older just due to age, nerve damage now will make our old age a bit more challenging. Still, if you gain control or become stable, you probably will not have too severe a progression.

Godspeed in your recovery.
MarkEns