Reply To: axonal polyneuropathy w/demyelinating features

September 5, 2014 at 2:22 am

I have gone through a number of different descriptions of my condition – differential diagnosis, I suppose. My early tests showed distal de-myelination, but later tests show something quite different – slow nerves with minimal distal effect. All the genetic tests for conditions like CharcotMarieTooth are negative. So the “slow nerves” lead to an axonal diagnosis. However, for me, this is still an autoimmune disease, because I am responding to immune modulation – plasma exchange, cyclosporine and prednisone. The response is very slow – kind-a-like the nerves,I guess.

By far the biggest effect for me has been diet. I have gone from ossobuco and steak-fries to lentils and kale. While not strictly vegan, I am about 98% there (difficult to give up butter completely – have to have a croissant with coffee every once in a while!). This has reduced inflammation dramatically.

I actually wonder if the reduction of inflammation by diet helped resolve some of the de-myelination, and so exposed some of the deeper nerve damage which is showing up in the emg tests.

There are so many variations in this condition, but I would encourage the change in diet. Its your life, it lasts only so long, and its a small change to make. I actually made the choice to become veggie from a moral perspective – I wasn’t going to be responsible for killing any more chickens in the short period of life that I had left. Interestingly, a few months after that choice, I started getting better. The change took about 8 weeks to settle in.

Cheers

Philip – GBS to CIDP to CMT then back to CIDP with ASMPN features over 4 years…