I can’t wait to see responses to this. My daughter is 2 and she has something half way between GBS and CIDP I guess. She complains of pain in her feet and back which could be nerves or arthritis. If it is her nerves and that is where the pain is coming from, is that good or bad that she has pain. How or why does axonal or permanent damage occur? I keep asking these questions to my neuro and I can’t get a technical answer.Does damage happen because you don’t get tx such as ivig or too much time between tx’s or is it due to the severity of the disease and therefor the luck of the draw? thanks guys

[QUOTE=donnam]Barry,

I am in the DFW area.

September 7, 2007 I had a colonoscopy. The next week I had extreme muscle fatigue. I could not figure out why. Then the loss of muscle strength started and progressed. After seeing a GP and two neurologist and many tests, I was diagnosed with CIDP March 24, 2008. Of course there is no proof, but there is no doubt in my mind that something happened during the colonoscopy that caused my inflammation. It has been suggested that maybe their equipment had not been cleaned appropriately.

I wonder how many people with CIDP have had a minor seemingly innocuous medical procedure that could have resulted in inflammation.

donnam[/QUOTE]
Hi Donnam,
My husband wonders the same thing. He had an intravenous pyelogram and stents placed for kidney stones. He wound up with a big infection in his arm and was on IV antibiotics for 10 days. He seemed to develop his CIDP symptoms after that episode.
Laurel

I was wondering the same. Not just for fatigue, though. I was wondering about the “electricity” thats torments me, too.

I’ve seen herbal GBS remedies. anyone had any experience with them? I thought maybe fish oil would help my nerves. I take extra calcium with vitamin d and i think that helps with fatigue, along with B complex. Would any of you agree? And how about foods? They each have their own healing qualities. Know of any? I think i’ll do some research on this stuff.

have to warn all of you about herbs though – promised my sons liver transplant doctor i’d do this. NEVER EVER EVER USE CHEAP SUPPLEMENTS!!! My son’s illness wasn’t related to herbs, but i mentioned “going herbal” to him and he said that he was doing a steadily increasing number of liver transplants related to bad reactions to “dollar store” supplements. He’s seen capsules with tons of lead, etc, and not the ingredients that are listed on the label. He didn’t say not to use herbs; he just strongly emphasized buying the well-respected (more expensive) brand.