Does anyone know about CIDP?

stevespda2

Hi, I know about the frustration! I have 4 neurologists who acknowledge a problem but will not give me a diagnosis.

Have you had blood tests? Have you had a lumbar puncture? The lumbar puncture will show elevated proteins. Do you have weakness in your legs or arms? Something should show up in a blood test unless it's more like me where everything is normal. I believe I have CIAP, Chronic Idiopathic Axonal Polyneuropathy.
-steve

mustang06

Wow, 4 neurologist, that's insane! Im sorry you have to go through that! I have had basic blood work, no lumbar puncture, no emg. I guess the doctor didn't set it up b/c I had a normal neuro exam. I have all my reflexes except plantar I have no response. I haven't loss any sensation or vibration sense. So doctors look at me like im crazy. Did you pass your neuro exam?

stevespda2

Hi,
No, I didn't. No reflexes at knee or ankles or arms. failed the romberg test. I have sensory ataxia and can not shut my eyes or I will fall. I have night lights all over the house so I can see my position otherwise I would fall into things.
It is my understanding that CIDP not only has neuropathy but weakness along with it, the key being weakness. For some people it starts in the hands and for some the feet. You may want to check if your feet/ankle area has more of a problem when changing it's position as there is a nerve condition similar to carpel tunnel syndrome but in the ankle. You may also want to compare your symptoms with videos of other people who have CIDP. I have learned a lot that way as well.
-steve

mustang06

Thanks steve, and Im sorry you are having to go through all of that esp with doctors not giving you answers. Its sad when we have to do our own research. The neuro I went to treated me like crap and said " You don't want to be sick, do You?" It seems as if mine all started out after back pain lifting my 20 lb 5 month old which is now 35 lbs. It didn't start in my hands or feet like other people say, it started in my back down my legs and arms. Who knows, but thanks for your help.
I hope you find your answers and get to the root of what is causing it so you can get better. keep your spirits up, Thanks and God bless.

Mommala

CIDP is very rare. There is a GBS/CIDP Foundation that will send you valuable information and may be able to guide you to a specialist in your area. Google GBS/CIDP and see if it pops up. Am not sure if the word is "Foundation" or something else but you will find it. There are representatives in most states. Give them a call and I think you'll find some good help.