Burning pain in feet

Dawn,

When my feet would burn and itch, it was always a symptom to get more rest. Remember, I do not have aidp or cidp, just regular GBS residuals. Someone on this forum has mentioned some prescription ointment for a pharmacist to make.

I’ve got to share again, that with me recently taking some good vitamins especially with B12, my symptoms in my feet are greatly reduced.

Good luck on finding your answers – you are at the right place!

i get the burning feet/ they feel like I am standing in hot sand or water and cant get out. I get this off and on and more when I start to relapse. and I dont really have any great cures for my feet. but this is a symptom of my CIDP. best wishes to you and hope you can find more out soon.

Dawn,
I’m curious about what tests were done that led to the conclusion that Kevie’s myelin is inflamed, not demyelinated. I thought demyelination was a core symptom of aidp/gbs and cidp.

Dawn,
I believe that both aidp and cidp show characteristics of inflammation, but there also is demyelination. That’s why the NCV shows a slowing of the signal conduction. They also measure the strength of the signal, which I think relates more to axon damage. There are a lot of things that cause similar symptoms. I have relapsing/remitting CIDP, which means I would spontaneously feel OK, then start getting weak again, etc. But after a year of that, the weak times were definitely worse than at the beginning.

I had a lot of diagnostic tests besides the EMG/NCV. Lots of blood work, MRI, basic physical evaluation (measuring strength, reflexes, etc) and, finally, a muscle and sural nerve biopsy. Some patients also get a lumbar puncture, but I was spared that. There is no definitive test for CIDP. It’s a clinical diagnosis that’s confirmed or refuted by other tests. They had to rule out muscle disease since my serum CK was mildly elevated, and the muscle biopsy is the way to do that. The nerve biopsy ruled out other possible processes (like vasculitis), showed no axonal loss, and confirmed demyelination and inflammation. Physical tests showed lower than normal strength and no reflexes. The total picture was consisent with CIDP, so they diagnosed me and put me on IVIG and it worked. Without it, my weakness would very quickly progress. The fact that Kevin isn’t progressing probably is why they’re looking at aidp, since I believe that the progression of symptoms is self-limiting. However, I’m not sure what you mean when you say there was no “obvious progression” when he was off it for 5-1/2 months. Relapsing/remitting CIDP progresses much more slowly than the progressive type.

I understand your frustration with the IVIG — it’s not pleasant, even for an adult. I’m getting an infusion Friday, which will be a 6-week interval (when I started I was getting it every 4 weeks). Maybe if he’s not relapsing, he can get it less frequently.

I don’t think nerves can get irritated from overuse and cause inflammation, but lots of activity could cause increased symptoms — you hear that all the time on these boards.

Keep asking the Drs questions and let me know if you want a referral to one that has experience with CIDP (I know 2).

Caryn

Dawn: I have GBS but burning feet is still a major problem for me two years out. I have posted this before but a prescription I use which helps me a lot is amtrip/baclo 2%/2%PLO-you need a prescription from the doctor and a pharmacy that makes up compounds. It sooths my feet immediately and lasts for hours. It might be worth a try. Jeff