Hi everyone!
I was looking around for info on my "new" diagnosis and was delighted to find all of you gathered in a new location! Nothing like being able to consult the real pros on PN matters.

For those that may not remember me - I have Crohn's Disease. I was originally diagnosed with beginning large fiber PN in my feet via EMG in Jan 2004. It took me begging my then PCP for 18 months to get a referral to a neurologist. My PCP did run some blood tests and had declared my PN idiopathic. The choice of neurologist was mandated by insurance. He ordered additional blood tests and declared my PN idiopathic. [As an aside, each appt he insisted I read a list of books to improve my immune system via meditation, etc]

An insurance change in August necessitated a neurologist change. I researched the choices and found a new neurologist in the area that specializes in PN. What a difference!!!!!!!!!!!!!

He repeated the EMG and nerve conduction test in my feet. It was only minimally abnormal and he said the results were consistent with the one done in 2004. He said the severity of symptoms were out of whack with what he was seeing on the test. Additionally I have quite obvious skin reactions with temperature changes. He is now treating me for small fiber neuropathy in my feet. I have a referral for a skin punch biopsy. The new neuro also ordered blood tests previously not ordered and some to double check. Small fiber neuropathy is one of the rare extraintestinal manifestation of Crohn's. But the new neuro said we might not ever know the cause.

I also mentioned to him that I have had increasingly numb and tingling fingers the last several years. He only had time to minimally check the left arm but that EMG showed large fiber ulnar neuropathy. He will check both arms soon and try to figure out where this is coming from. He suspects it has to do with the spondyloarthropathy problems I have.

B12 Update: In Nov 03, my B12 was 512. Two months later following a bad Crohn's flare it was 323. My B12 levels hovered between 320 & 383 in 2005. I started taking Methylcobalamin 1 GM sublingually daily last year. Last month, the new neuro ordered another B12 and it was up to 888!

Any comments gratefully accepted. I have had a pretty rough time these last 3 months and the stress has made me more forgetful than ever. My wonderful husband died unexpectedly the day before our 30th wedding anniversary. We were on vacation. He was in great health, only 58 years old. I miss him terribly....So any advice for me would be wonderful.
Ides