Reply To: Anyone with Sensory Predominant CIDP?

August 20, 2018 at 3:47 pm

Hi PikNik

Re your question about complete and constant lack of sensation:

My experience has been very similar. Over the six years and especially in the last year the numbness has become complete in my toes and front of feet. Top to bottom. Pinch as hard as you can and i wont know. Also feet are cold even in summer in winter they feel like ice cubes even under blankets.

My biggest problem though has been weight bearing pain. Even though they are completely numb if i step down on something sharp on one of my foot balls it feels like a stab. I sm not sure how the numbness and the stab co-exist. I am highly stressed walking even on carpet in bare feet. I have recently taken to wearing protectors like these nearly 24/7 -

Regarding my hopes for my current Prednisone + IVIg treatments:

I have to limit myself to hoping to stop the SP-CIDP progression. And the burning. I am having to accept that the numbness and the cold and the weight bearing pain will remain. My family and i are downscaling and moving to a warmer climate and a new career for me. I may come out better but after this six year chase i have to be conservative in my optimism.

Still i feel lucky i have learned how hard CIDP can hit and I am on the lucky side especially if i can stop the progression.