[Lifeofparty]

I'm a 46 female, no previous health issues, recently diagnosed by skin biopsy with Idiopathic Length Dependent Small Fiber Polyneuropathy.

I've had every test to check for underlying cause & all tests are normal, except I don't feel normal! :-)

Looking for other women diagnosed with SFN to form a support group.

No one seems to understand what we go through on a daily basis, would love to hear from others...

[Susanne C.]

Originally Posted by Lifeofparty

I'm a 46 female, no previous health issues, recently diagnosed by skin biopsy with Idiopathic Length Dependent Small Fiber Polyneuropathy.

I've had every test to check for underlying cause & all tests are normal, except I don't feel normal! :-)

Looking for other women diagnosed with SFN to form a support group.

No one seems to understand what we go through on a daily basis, would love to hear from others...

I was diagnosed at 47 with SFN, but I also have large fiber neuropathy, and was put in the hereditary rather than idiopathic category. I am now 51 and have lost quite a bit of ground in the last few years, as my condition causes muscle wasting . You have a lot of company with your diagnosis. This entire forum is a support group for many of us.

What are your symptoms like?

[stilldeb]

Hi

I have recently been diagnosed with SFN by QSART testing at Vanderbilt in Nashville. Have not had my return appt yet as this doc's schedule is crazy-full, but have been in touch by phone and web. All my other tests were normal or near-normal, too, and I have been to sooooo many other doctors (one of which told me to just 'go get a massage'). It primarily affects my hands/arms/feet/ankles with pain, numbness, tingling, huge weakness. I also do not sweat (proven by QSART) as a result of the damage, which puts me at risk of heat stroke, and I have Raynaud's.

I have Celiac disease, and the SFN could have been caused by nutritional/B12 deficiencies/malabsorption related to that. I take small dose hydrocodone/tylenol as needed during the day and also additional prednisone, as I also have Addison's, and the two do not like each other.

Docs say I am "complicated"...to say the least...my ortho just says I'm "a weirdo"...I like him. He says he is just my mechanic, fixes what I break.



Deb G - 56, married 38 yrs, 3 kids, 3 grands
KY

Originally Posted by Lifeofparty

I'm a 46 female, no previous health issues, recently diagnosed by skin biopsy with Idiopathic Length Dependent Small Fiber Polyneuropathy.

I've had every test to check for underlying cause & all tests are normal, except I don't feel normal! :-)

Looking for other women diagnosed with SFN to form a support group.

No one seems to understand what we go through on a daily basis, would love to hear from others...

[glenntaj]

--you're not that unusual, at least from where I'm sitting; celiac/gluten intolerance is a known producer of peripheral neuropathy, especially small-fiber kinds, and this can result not only from nutritional malabsorption but directly through nerve cross-reaction to gluten peptides.

Much of the work on this has been done in Europe, but in the US there are a number of researchers at the Cornell Weill and Jack Miller centers (in New york and Chicago, respectively) who have researched this in considerable depth. (My neurologist at Cornell Weill, Dr. Russell Chin, has published copiously on this subject with his colleagues).

You definitely should take a look at the neurological sections of The Gluten File, which we have linked right here in our gluten/celiac forum. The Gluten File is the single most comprehensive database out there on the subject, with links to thousands of studies and papers. It's creator is Cara (jcc) who has gone through an incredible journey for both her condition and those of her offspring and is, I think, the person most individually responsible for bringing gluten issues to mainstream discussion of the last decade:

http://neurotalk.psychcentral.com/thread1872.html

It's gotten to the point that I know Dr. Chin and some other doctors will actually tell you that if you have a small-fiber neuropathy that other tests have been negative for, not only should you be titred up for gluten antibodies, but even if these are negative it wouldn't hurt to try a gluten-free diet, which is an intervention that is not harmful, and may help.

[stilldeb]

Originally Posted by glenntaj

--you're not that unusual, at least from where I'm sitting; celiac/gluten intolerance is a known producer of peripheral neuropathy, especially small-fiber kinds, and this can result not only from nutritional malabsorption but directly through nerve cross-reaction to gluten peptides.

Much of the work on this has been done in Europe, but in the US there are a number of researchers at the Cornell Weill and Jack Miller centers (in New york and Chicago, respectively) who have researched this in considerable depth. (My neurologist at Cornell Weill, Dr. Russell Chin, has published copiously on this subject with his colleagues).

You definitely should take a look at the neurological sections of The Gluten File, which we have linked right here in our gluten/celiac forum. The Gluten File is the single most comprehensive database out there on the subject, with links to thousands of studies and papers. It's creator is Cara (jcc) who has gone through an incredible journey for both her condition and those of her offspring and is, I think, the person most individually responsible for bringing gluten issues to mainstream discussion of the last decade:



It's gotten to the point that I know Dr. Chin ans some other doctors will actually tell you that if you have a small-fiber neuropathy that other tests have been negative for, not only should you be titred up for gluten antibodies, but even if these are negative it wouldn't hurt to try a gluten-free diet, which is an intervention that is not harmful, and may help.

Thanks for posting the info, I will check it all out. I have been on a gluten-free diet since it became obvious several years ago what the problem was, at first it was vague and quickly became much worse, now if I get accidentally glutened it is what I call "makin' a deal with God bad"...like "oh Lord, if you just let me live through this, I'll...". It is immunodeficiency-related celiac disease, as I am sort of an autoimmune disaster, long story. But I can't touch wheat, literally. I even got sick from something a beautician sprayed on my hair a few weeks ago, apparently some of it landed on my face/lips, and contained wheat protein.

I do inject B12 as I do not absorb supplements well, also having problems absorbing pain meds, but not sure I am ready to make the leap to something like a Fentanyl patch yet.

The doc that (finally) diagnosed me with SFN did connect it to my celiac and B12 deficiency, but I am still waiting for my return appt with him (or a cancellation) as he is one of the top guys in his area at Vanderbilt and difficult to get an appt with.

deb g
KY