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

Greg – I have multifocal sensory-motor CIDP, but by far predominantly sensory and had a very similar experience as you on diagnosis. My original highly qualified neurologist actually reported that I was pretty much faking it! However, to my knowledge sensory dominant CIDP is not that uncommon but in my experience even the well qualified CIDP specialists do not understand how debilitating it feels! I have posted on the website CIDPlog the following –

Sensory vs Motor Response- Early on in my case it was found that many of my symptoms were largely “sensory” [as opposed to motor] but all the same VERY real and debilitating to me. Sensory nerves reach the brain and motor nerves the muscle. The fasciculations are clearly visible in say the calf and appear like muscle bubbling / boiling-water or wave-like-twitching: You can feel and clearly see the muscles bubbling (often with a painful twitch) but there is also an (invisible) “wave” and/or “vibration” / buzzing sensation (in the individual muscles and even throughout your body). Doctors say I do not have an ataxic gait but I feel I wobble like a drunk! I struggle to stand for fear of toppling-over but to an outside observer appear quite steady and normal. Apparently sensory symptoms are ONLY felt by me and seemingly cannot be visibly observed by others (and only discovered with appropriate nerve conduction studies). Even though my CIDP is very sensory-dominant, it does seem that in 2015 my sensory response is “progressing” into more motor response over time. My strength loss is not yet serious but my intermittent stumbling (caused by sudden loss-of-control and perhaps temporary muscle weakness) is always a threat. Importantly, my strength loss has not been observable to me – I can still “run” a slow 10k and measurements on my arms show about a 15% loss in strength by 2018 compared to early 2015.
CIDPlog.com

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.