I have mainly sensory CIDP, MADSAM variant, but feel I may be starting with some motor loss in my legs. I have broad sensory loss, at some level, almost over my entire body. No luck from IVIg or subcutaneous Ig. Symptoms are increasing. My first [clear] signs and then diagnosis of CIDP was a year ago, August 2022. I also have several other autoimmune disorders including Crohn’s Disease, Hashimoto’s, and vitiligo, with the last one being the only one I have had for years. Crohn’s was bad enough to require a bowel resection in January 2022. [Yes, it’s been fun the last couple years.] Changes in my legs have me concerned about motor loss. Any early warning signs,?
Thank you!
I was diagnosed as a “dirty CISP” at Mayo Clinic in 2003 (after 5 years of symptoms and being told nothing wrong) by Dr. James Dyck. My symptoms were mostly sensory (waist to toes, splotchy patches on chest/abdomen, radial nerve right side, ulnar left side, etc.), but I had some toe-drop on the right and could not dorsiflex it. Also had some proximal leg/hip weakness and had trouble getting up from the ground. Steroids and IVIG were not very helpful to me. Symptoms stayed fairly constant. I did develop foot drop on both sides and have worn braces for that for many years. About 5 years ago began to fall more often and it seemed to be because I wasn’t picking up my legs as well and needed help with the swing phase of my gait. Changed braces which helped with this. Then just started feeling weaker in my legs and muscle loss. 3 years ago fell and fractured my tibia and fibula and had to have surgery and a rod, plate, screws implanted. Because of the neuropathy, surgeon would not let me bear weight for 12 weeks. Balance was not good enough to use crutches, so have been in a wheelchair since Lots of factors have contributed to that, but had I been able to continue with PT/OT for longer I think it would have helped. One thing I can tell you from experience is that I/we lose muscle mass rapidly when we don’t exercise/use them. I walked with a cane for 15 years to help with balance, then realized I needed it as a support for weakness as well, then had to use a walker and was still falling. I sincerely hope yours does not progress to motor involvement, but I have had many neurologists tell me it’s pretty rare not to see it progress.
Thank you very much for your reply. Your description of your case sounds very similar to my own. The distribution of your sensory loss, and starting with some foot drop on one side, is very similar to mine. I’m pretty sure but I have started my motor weakness phase. In particular my left knee and hip and my right tricep. It is quite difficult for me to get up off the ground and even from a chair sometimes. I sometimes forget that and hop off a chair and almost topple over. For me though, this level has only progressed to this in the last couple weeks. I did IVIG/subcutaneous IG with no results. I’ll be starting on a chemo drug in the next couple weeks, cytoxan. Have you ever used that?
I had CIDP and was having difficulty walking , in 2014. I found a doctor who cured me with Solumedrol. After months of decline and misdiagnosis I noticed improvement in 3 days and have been walking more or less fine for nearly a decade. I am left with small neuropathy in lower legs and a bit in fingers, but officially I am “cured” for more than 5 years. So you might give solumedrol a try, although that too has side effects.
Lots of factors have contributed to that, but had I been able to continue with PT/OT for longer I think it would have helped. One thing I can tell you from experience is that I/we lose muscle mass rapidly when we don’t exercise/use them. I walked with a cane for 15 years to help with balance, then realized I needed it as a support for weakness as well, then had to use a walker and was still falling. I sincerely hope yours does not progress to motor involvement, but I have had many neurologists tell me it’s pretty rare not to see it progress.