Reply To: Any knowledge? My CIDP stayed primarily in the sensory nerves for 5 years

August 20, 2018 at 2:04 pm

Hi Greg! Thanks for commenting on my other post. I appreciate the response. I have had 9 rounds of IVIG (Gammunex-C) so far and at the very least, it seems to be holding it steady, so no progression. My last neurology appointment showed improved reflexes in my arms and legs so it must be doing something good. I cannot take steroids so I’ve not got to try it out, but I’m in no pain whatsoever so there is that. I tolerate the IVIG very well as long as I’m hydrating like crazy. Now, big question… When you say Sensory, do you have complete and constant lack of sensation? I have not been able to feel my feet and lower legs for years now, and by that I mean I could probably walk through fire and not even feel the pain. My fingers are just about the same although I register pain after a couple seconds. Like I put my hand in hot water and don’t realize it’s too hot until I end up with a burn. Are you like that as well? I also drop about every other thing I pick up. Can’t hold on to anything anymore. Very frustrating.