I know it isn’t the nicest way to find out answers but I had a nerve from my ankle taken out.

This proved that I had CIDP as the nerve showed demylenation and re mylenation.

Something to think about and ask the docs?

Is hubby on any meds for pain like Gabapentin?

Good luck,
Rhonda

I had mine done at Mayo in 2002 & it was read by Dr. Peter Dyck Sr. His son )same name) still works there & there’s a good chance he read yours. Anyways, I would definitely trust Mayo; getting a dx is what they’re all about…

Hi,

I had a normal spinal tap, assymetrical weakness with focal blockages.

they did HNPP(Hereditary Neuropathy with tendancy for pressure palsey)
basically the genetic test for compression damage. Before trying anything.

Steroids accelerated my decline, so we immediately went to IVIG and it made a huge difference. So that solidifies my diagnosis.–tim–

Glad I didn’t have to have any biopsy done.

please read this article re: nerve biopsy and cidp–
i would think twice before doing it!

[url]http://www.cidpusa.org/katz.html[/url]

alice

I dont know now if I am Lucky or unlucky I had my biopsy done and I havent felt a thing from start to now. But my legs and feet have been numb for 3 years. So I wonder what may be worse?
:confused:

Hi,
My husband had a nerve biopsy in June, he has a not-so-bad scar but the docs were looking for inflammation and didn’t find any. His myelin is deteriorating but his nerve fibers seem healthy. Problem is they didn’t get a diagnosis (other than CIPD), he has the scar and the pain is so bad that he needs a pain patch to sleep at night. He does regret having it done.:(

Hi Sandila

I just had a nerve biopsy done on Monday. I was also nervous about getting this done because a very small percentage of people get something called a neuroma afterwards, which is basically a painful tangle of nerves above the incision site. I haven’t been feeling particularly lucky these days — I’ll guess that you know the feeling! But I agreed to the procedure because my doc thought it was important enough to outweigh the risks. I do have substantial sensory issues to start with, but the foot below the cut nerve is totally numb now. I should add that the sural nerve feeds the outside of the foot, so the bottoms are still the same. The neuro sugeon said to wait 6 months to know what the final outcome might be in terms of nerve regrowth. The trickiest part of the procedure for me was walking with crutches for 2 days afterwards, lol.

I wonder if the confusion and lack of focus and concentration may actually be symptoms of anxiety or depression? This is probably something you should consider.

Best wishes,
Helen