Reply To: Your Progression of CIDP

September 6, 2013 at 3:30 pm

I haven’t been diagnosed yet but I’m pretty sure it’s CIDP. 6 years ago I thought I was having an allergic reaction to Frontline for the dog. So I was careful from then on I didn’t tough the dog for a few days. I started with tingling and burning on my scalp and face which lead to my arms. Then within a week it went away. 2 years ago I f=got it again and I didn’t use Frontline. Same symptoms but it lasted longer and my face was really bad. I went to the D and he said it was Bell’s Palsey and gave me steroids. It went away within 2 weeks. This May I got campylobacter jejuni (a bacterial infection of the gut). A week later the CIDP started again. My feet felt dry so I lotioned them not thinking it was a symptom. A few days later I felt like there were bugs in my hair creeping aroung. I had my husband check and there was nothing. Weird I know! Then it turned to tingling the burning. It started to go into my arms a few days later. I went to another doctor thinking it was Lyme’s. She did a bunch of blood work and a CT scan and came up with low Vitamin D and nothing else. A few weeks later it started working into my feet. Burning between my toes and head aches. I went to another DR and he did more test. This time I had low liver functions. He suggested an neurologist. I’m now scheduled to go to Mayo’s in Rochester the 19th. I was lucky they accepted me and very happy because they work as a team and are supposed to be good! Now I wait and in the mean time weakness is starting and well as cramping in my legs. It’s progressing VERY slowly but now going away like it has in the past. I’m pretty sure it’s CIDP from all the research I’ve been doing. This site has helped a lot! I hoping in a few weeks I’ll know for sure!