I am newly diagnosed with CIDP. I've had peripheral for years as a result of chemo therapy for breast cancer but inJan. my symptoms got worse and new ones developed. I pursued a diagnosis and now I have one.
I am quite interested in the Wahls Protocol diet. The Dr. has used it for her MS and says she thinks it will help all auto-immune diseases. I'm interested in interacting with anyone who is trying it. Frankly it is hard and i'd love some encouragement.
I'm also in the process of finding a doctor to get a second opinion. One with lots of experience. Not easy since this appears to be a rather rare condition although I do wonder if many of the people diagnosed with idiopathic neuropathy actually have undiagnosed CIDP.
I'm thrilled to find a web site and forum for questions and sharing of experiences.
You should go to Cleveland Clinic. I live in Pa and neurologist sent me there. They said I have AISP a form of CISP. They just found this disease in the 80's. I think it about the same as MS. I had the spinal tap, nerve biopsy and mri's and scans. I am doing IVIG now its helped a little,but doctor in Meadville said I would not get my hands back to normal it will stay this way. Arms are numb and hands and heavy a my legs. So tight around the middle, and that won't go away.
Hello Mikki, welcome to the forum. Great people here, with lots of good information and support. Its funny that you mentioned the Wahl Protocol, I was just reading about it a couple of nights ago. I told my wife that I might order the book to learn more. It is a bit scary, when I consider the changes that I would have to make in my diet. I KNOW that I need to eat healthier, but this would be a huge shift in my eating habits.
Please share any other information that you find on the diet, and hopefully others will respond if they are interested or have tried it.
My husband have been trying to follow it and it is hard. Actually when you get the book, you'll see she has three different levels so you can work your way up. We're struggling with the middle level.
I think the theory that auto-immune diseases all start at the cellular level and can be treated with nutrition. I'm not sure what that means for damaged nerves and she hasn't proven any of this on a clinical basis but if you to her Tedx Talk (on Tube as I recall) you will be inspired. I'll see if I can find it and post the link.
I haven’t had any tests since we have gone on the Wahls Protocol but I feel better and have lost 6 pounds. It is quite challenging to give up dairy and gluten. I’m not doing it perfectly but striving to eat more quality seafood and lots of fruits and vegetables. I’m learning a bout the dairy substitutes.