CIDP since 2008

I was diagnosed with CIDP in October of 2008. Three weeks before that I had my tetanus shot (cocktail). That night I came down with a high fever and continued to feel very weak for 3 weeks after that. I also had cramps in my feet and legs. I was walking 5 miles a day before the tetanus shot then after the fever I couldn't do more than half a mile. I thought I was getting lazy but I knew something was wrong with my body. After I was admitted in October of '08, my doctor immediately knew what I had. They did a spinal tap but by that time I had already lost my ability to walk. For four and a half months I was either in the hospital or in rehab. When I finally came home in Feb. '09 I was paralyzed from the waist down and my hands and feet were numb. During this time, I also developed a severe tremor in my hands. I feel that this, more that anything other symptoms of the CIDP worsened my quality of life. I was unable to eat by myself, bathe or dress myself. I have done IVIG, plasmapheresis, prednisone, and chemo. But the one thing that I feel helped me the most was accupuncture.

It has now been 3 and a half years and with the help of weekly physical therapy and stopping all medication I am finally able to walk with the assistance of a cane and/or walker. My tremor has also gotten much better, but it's not gone. Has anyone else experienced this? Have you done anything to make it better?

Lately, the balls of my feet feel swollen and painful in the morning and I am unable to step on them for about an hour or so. I told my neurologist about 3 days ago and he said that it's my nerves trying to regenerate. Anyone out there feeling the same thing?

I want to ask one more thing... Anyone have a painful itching sensation? My foot will itch and when I go to scratch it I get a shooting pain. Has anyone had symptoms like these and have gotten better? I feel very frustrated and would love some words of encouragement.

Thank you for your time, Maria

I feel with you. Nerves can do many funny things. I started in December of 2010 after a flew bug. I was paralized up to the chest and the lower part of my head, legs, bud, bellyarms and hands were numb. I was first diagnozed with GBS and 6 mos later doctors were wondering if I had a mistreated GBS gone over to CIDP or did I start out with CIDP. Its hard to proof now. I have been on IVIG for over a year now and I am slowly regaining. The first 6 mos I had extreme nerve pain all over until I started IVIG. I believe it was the pain of nerve destruction like flewlike pain. During the healing process my feet that are still numb inside became extreme sensitive to hot and cold. My finger tips could not touch a pen, because they were over sensitive. It takes forever fo nerves to heal. Just make sure that your pain is not comming from further nerve distruction. I might be going through a oversensitivity stage. I am sure that accupuncture and propper nutrition are helping you a lot. Keep notes so you allways have a point to compare to.