Hello Kathi

I understand your frustration. I also agree with others on this forum that CIDP is so variable, and causes different disabilities and different responses to treatment across the spectrum of people who have the disease.

I have an asymetric subset of CIDP that in addition to demyelination, also causes pretty severe axonal damage in motor and sensory nerves. Despite aggressive treatment and physical therapy it is really hard to gain that lost function back that is due to axonal damage. It is a long haul, but I keep at it.

Relative to treatments, I’ve settled on IVIG, and here is how I see it. If I did not do IVIG regularly, I would probably lose the ability to walk, possibly permanently, along with the severe advancement of other current disabilities within 12-18 months. With IVIG, I believe I have 10 – 15 years until I reach the same state given my current state of progression on IVIG. IVIG has proven to slow my rate of progression – and for that, it is extremely valuable. That could be the case for you too, but you need to find a doctor that is willing to dig in for the long-term.

In my personal case, I am ultimately looking to try an ultra high-dose chemotherapy regimen, like cyclophosphamide, to see if that will really knock the disease into a true “remission.”