• Anonymous
      November 10, 2008 at 10:34 am

      Hey ‘yal – thanks for replying and all the good advice al of you have given me. Awhile, I think it was Gene that sent me an explanation of CDIP along with recommended treatments. CDIP was mentioned by that rude neuro, but could all the pain and neck and top of head be that and it reoccurs every three months. This time its over six weeks. My husband wanted a better of explanation of CICP than I could give him. However someone on the forum, (gene) sent me one. Could someone reply with explanation of CIDP and treatment. Thanks a million. Still suffering through. Bunny

    • Anonymous
      November 11, 2008 at 9:52 am

      Bunny, I’m sorry to hear your still suffering. Hugs!! Have you requested the information from the foundation? It does a good job of explaining cidp.
      The way I see it is cidp is the chronic version of gbs, it keeps giving where as gbs you recover alittle more, sometimes completely. With cidp you might recover to a point in between relapses, but don’t recover to absolute normal. When I have my relapses, I get a sore neck, and a certain type of headache that starts on the frontleft side, in one spot, then triggers another one that follows a line from my neck up and over the top of my head down to my eyes. I also have eye involvement, pain and almost double vision. I get these symptoms everytime a relapse comes on-have been having them for this relapse for a week now. I have been over doing it, raking leaves housework, and alittle more stress lately, so I’m really not helping things out too much.
      I hope you get feeling better soon. Keep resting. Take care.

    • November 11, 2008 at 11:42 am

      Hi Bunny,
      This is our experience w/cidp. We were first dx w/ gbs, the cidp dx eventually came. Call the foundation and request a mailing, they will send you a book that explains things in detail. I can give you a condensed version of my 11 y/o’s experience.

      Over a five week period, my son started out with tiredness and hamstring pain. It progressed to weakness in the feet, up to his arms and hands with tingling and pinching. He was not able to walk and his bowels, bladder and respiratory system were soon affected. We were dx by a ncv/emg and spinal with elevated protein. We immediateley recieved ivig for treatment and it was a miraculous recovery. We thought we were done with this and the gbs was gone from our lives. About 5-6 months later, the symptoms returned and we went back to the hosp. had ivig again and recovered again. We now knew we had cidp, not gbs. We currently get ivig treatments every month at home from a homehealth care agency and things are moving along.

      Don’t know if you know what cidp is, if you do just disregard this. It is an attack on your nerves/myelin sheath from your immune system. It is essentially an overactive immune system. There is usually a trigger, they are all different, Kevin’s may have been multiple bee stings at one time that turned his immune system on to fight off a allergic reaction and it never shut off and started attacking his nerves, or it could have been his surgery for a tonsillectomy. Some people have a trigger from vaccines, illness being a cold, respiratory issues, raw chicken, any number of things. Once the attack starts, autoantibodies (bad) overproduce and start attacking the myelin sheath (like the orange part on an electrical cord, the wires under it being the nerves) My son reacts quickly with ivig because it puts out the inflamation on top of the myelin sheath and the nerves can then get the message from the brain to move the muscles. Some who are more sever, have the attacks and the myelin sheath (orange crd) is penetrated and the nerves then get attacked. When this happens it makes things more difficult.
      The ivig is usually the first line of defense, it is a plasma product made up of thousands of donors filled with antibodies. It is not exactly clear how it works, some say it works as a barrier on top of the sheath (orange crd) and the immune system attacks it instead of the myelin. Others believe the antibodies in it stop the autoantibodies from overproducing and kind of flood the body with these good antibodies. It is usually given in the hospital the first time over 5 days to be sure you do not react to it. Everyone is different, for instance my son responds beautifully in the first day of treatments, otheres need a few loading doses to see results. It may take a while to figure out your treatment needs. After ivig, if no results are seen, the frequency may be increased or steroids may be introduced. The ninds site can give you exact protocol. Mayo clinics site as well. Good luck and if your are already properly dx, start treatment asap, the sooner you start, the less chance for permanent disaqbility.
      dawn Kevies mom