New neuro is much better.. Now I have two types of PN
 

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

I am so sorry about your husband....
 

Please accept my deepest condolences. I've been married 38 yrs (not counting the 3 before that). I would be devastated! You sound like a strong person.

As I age I begin to realize that every day is a gift. And you had 30 yrs of that.
Most people do not. I know this does not make up for the loss, but as time passes, you will remember those years. And he is with you in some way, everyday too. I believe that.

Hmn. Crohn's? Low B-12? Small-fiber involvement?
 

This strongly suggests the possibility of gluten sensitivity/celiac; did they do any serum tests for anti-gliadin or anti-transglutaminase antibodies?

We have a whole gluten forum here (as there was at BT1); you might want to reprint your post over there and let those experts respond, too.

I also want to extend my condolences on the loss of your husband.

You are in my prayers. I do hope you are feeling a bit better.

Take care, (and a hearty welcome to our new home, here on the PN boards)
Melody

Thank you for the kind words.

Glenn - I have had not only blood testing for celiac disease but biopsies during endoscopy. Both tests were negative.

Ides~
I'm sorry to hear about your loss. I feel your pain. I lost my husband 21 years ago. There are no answers now. (((Ides)))


Hugs,
Jan
Welcome to the forum too!

Good to hear that, Ides--
 

--but, as I'm sure our gluten people will tell you, neither of those negative results rules out a possible neurological gluten sensitivity, which can be very hard to diagnose, and which can lead to gluten ataxia, neuropathy, etc.

Something still to keep an eye on for the future--plenty of "negatives" have turned positive later on. It seems sometimes neural disruption can be a presenting feature.

Having one autoimmune condition greatly increases the possibility of others one day showing . . .and there are antibodies that are specifically targeted to certain components of peripheral nerve (the GM's, GQ's etc.--Liza Janes's charts have a list of these; might be interesting to look to see if you were titred up for all of them).

Got more test results - anyone want to weigh in?
 

Got the following blood results that I can't wait for my neuro to explain to me:
IGM [Immunoglobulin M] - low. Value 40 [reference range 48-271]
IGA and IGG were both normal.

B6 - high. Value 34.7 [reference range 3.3-26.0]

Thankfully, and finally, a neuro that is doing the testing to get me some answers.

Ides
 

Welcome as a new member!! But more importantly, I am so sorry about your dear husband's passing. It is always so hard but you were on vacation and ready to celebrate your 30th Anniversary!! No wonder you are having a flare.
I have a very dear friend I have met on Braintalk who has recently lost her husband and frankly, I don't know how you get through something like that. Again, you have my sympathy.

nancy-h