Reply To: Anyone with Sensory Predominant CIDP?

February 7, 2018 at 6:48 pm

Wow! Sounds like it’s been quite a roller coaster for you. I’m looking forward to trying the IVIG because I think it will be the most minimally invasive on my system with the other medications I take (bi-polar and anxiety). From the very onset, 13 years ago, I never had pain. For the first couple years I had what I called “nerve jolts”. I would get a sort of jolting sensation in my lower legs and feet, but only at night when I was laying still. After that I never had any other pain. I just slowly went numb. The numbness in my feet is so pronounced that last year I accidentally kicked the corner of a wooden box and broke my pinky toe and did not even realize I had broke it until I saw blood on the floor from the skin between those two toes being torn because my pinky toe broke outward. After the day went by I felt some deep dull pain when I walked on it but that was pretty much it. I have to be super careful and check my feet often for cuts. I’ve never had muscle weakness or pain or balance issues either. Just loss of sensation. Losing the feeling in my hands has been far worse than my feet though. I drop things all the time, can’t open containers anymore or use a keyboard. It’s awful.