Any knowledge? My CIDP stayed primarily in the sensory nerves for 5 years
August 11, 2018 at 6:14 pm
I’m wondering if anyone has knowledge about my CIDP variant, which stayed primarily in my sensory nerves for the last 5 years. I had progressive nerve pain in my feet, starting in big toes and steadily moving upward (all toes, balls of feet, etc.). I tried to chase down the cause with several doctors, but the diagnosis remained idiopathic (unknown).
But over the past year, the pain and progression steepened, and numbness went all the way through the top halves of my feet. I had another EMG done about a month ago, and several of my amplitudes fell to near zero. I lost reflexes in arms. This all spurred my neurologist to diagnose me with “probable CIDP,” and now I’m taking Mycophenalate and Prednisone, and I’ll soon start IVIg.
I believe that one of the biggest reasons that my CIDP was considered idiopathic for so many years, is because it manifest primarily in my sensory nerves. I know I’m lucky – my muscles e.g. in my toes and feet – worked all these years, even though they were in pain. I think even today they work at 90%. The downside has been that my sensory-primary impacts made my CIDP even more difficult for neurologists to diagnose.
I’m three weeks into the Prednisone 60 mg and it seems clear that the war inside my feet is no longer being waged. The pain is less. I’m optimistic for IVIg to work as well.
The reason I write:
I’m wondering if anyone has knowledge about this CIDP variant, which stayed primarily in my sensory nerves for the last 5 years. I’ll take anything you got. I’ll share back with whatever I know (which is a lot at this point I’ve been chasing this for all those 5 years).
August 14, 2018 at 11:27 am
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.
August 14, 2018 at 12:03 pm
CIDPlog – thanks for taking the time to explain your case. Yes our paths have been similar I believe. Are you having any luck getting your CIDP to stop progressing? Greg with CIDP
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.
August 20, 2018 at 2:12 pm
I probably have relevant info for you. Yes i have the same utter lack of feeling although only in my upper feet.
I suggest we exchange our thoughts on the very high-momentum chat string you started elsewhere, and let this one sunset. That way we can learn and share with the bigger group you got going.
If you agree just repeat your question to me on the other Sensory Predominant chat string you got going and i will answer there.
August 24, 2018 at 2:34 pm
Hello if you are interested in sensory related CIDP please switch over and read or converse on the the chat forum called “Anyone with Sensory Predominant CIDP?”. Its at https://forum.gbs-cidp.org/forums/topic/anyone-with-sensory-predominant-cidp/
This other forum covers the same topic and this other forum has a lot of good conversation underway. I am going to stop using this one.
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