Why is the nerve damage in some areas and not in other areas

for me most of the damage is in my legs.from the hips down and the middle. of my body i dont really have any. but my neck is really bad.so bad they cause alot of my headaches.just trying to see if others have the same problems.thanks

Hi John:

Like you, most of my nerve damage is from my knees down and in my feet. I have no reflexes from my knees down and from my elbows to my hands. It has gotten somewhat better with treatment but I still cannot feel my right foot and toes very well. I, too, have pain on right side of my neck which sometimes causes headaches. I can't offer any solutions since I'm still trying to get all my systems settled now.

Sometimes a low tapering dose of prednisone can help with the migraine headaches.

CIDP attacks the sheath that covers the nerves- kind of like taking electrical wire, and removing the plastic outer covering in random places. Although GBS almost always starts in the feet/leds and moves upwards, there is a less specific pattern for CIDP, and everyone is different. Your headaches/neck pain can be caused by certain treatments, but I don't see your therapy(ies) listed. If you are off-balance, or for other reasons holding your head in an awkward or constant position, this can also cause the neck pain and headaches. It's really impossible to say without examining you, and even then, may not be clear-cut.

Your Hip to leg involvement is typical (if there is a "typical" CIDP patient). See if your doctor will prescribe you some Voltaren (diclofenac) Gel- you can apply it topically to the skin over your neck muscles, and may get some relief without having to take another oral medication.

Hope this helps you. Keep a positive outlook. A lot of us know what you're going through.

I’m grateful I don’t have the headaches as bad as most. My unbearable pain is in both my feet. There are no words to describe the pain I have. I can’t feel my feet very well. I am unable to walk without help, most of the time I’m in my wheelchair. It sounds weird but my feet don’t like shoes and socks. So I can’t wear shoes or socks and I can’t go barefoot. When I have to wear shoes and socks for going to a dr visit the pain goes completely off the charts. I’ve never had pain like this- it’s so unbearable. I’m on lortab and fentynal patches for the pain, but it hardly touches it. It feels like I’ve tried everything to help with the pain but nothing works and now I can feel it moving up my legs. All the CIDP treatments I’ve tried haven’t worked. I did hear about a specialist in the Netherlands but I can’t afford to get there yet. Has anybody got any suggestions for pain control or heard about the Netherlands dr? I’m at the end of my rope!! Anybody, please help.

i had a lot of pain and burning sensations, headaches...... after all the drugs i decided to try a magnetic matress pad made by nikken. it helps me as i am now only taking ivig infusion (gamunex c) every 2 weeks and about 2 ibuproen 800/mos. i am thank full, i don't like to depend on more drugs. i would have never believed that it helps, but it works for me.

I don't have much feeling in my feet and hands, then my legs burn and get week. Recently when I walk my legs feel like they are cramping all the time. Left leg gave out on me last night and I went down. I'm so tired of falling, (11 times since the first of the year). And I'm taking 250 Mg of Topamax for the headaches, whech are just getting worse.