[Sheltiemom18]

To the SFN folks,

Decided to search "idiopathic small fiber neuropathy prognosis" tonight, and WOW. Could not believe what popped up.

Small fiber neuropathy: A burning problem - an abstract by Cleveland Clinic docs Jinny Tavee and Lan Zhou.

Lan Zhou, M.D., PhD. is the one who did my skin punch biopsy in January. Was stunned when I read this.

Why my CC neurologists never had me back for a follow-up appointment I cannot imagine. I'm upset. They are right down the hall from where the biopsy they ordered was done. Guess it was because all of my tests showed up negative, and I couldn't tolerate the usual meds for the burning pain. They never even mentioned there were any other modalities.

This afternoon (before I found this abstract), in an effort to try anything that might put me in good enough shape to go on vacation while plowing ahead with the supplement regimen, I searched Cleveland Clinic on-line and found the chronic pain department. Spoke with one of the nurses, told her of the SFN Dx, and she explained the different treatment modalities. Will be going as soon as they call with an appointment. She offered no guarantees. Of course I had to first be cleared by a financial consultant. Somebody tell me it's not all about the money.

This abstract describes me to a "T." Because I have the non-length dependent, the face/scalp and some areas of the trunk are also involved. Still don't really feel as if I have Sjogren's because the other stuff that manifests with it is absent and the labs for it all negative.

[glenntaj]

--to this paper as well (which is our Useful Websites sticky):

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

BTW, among the small-fiber reports, proximal involvement of the body--face, lips, chest, back--is not uncommon in neuronopathies/gangliopathies (such as are found with Sjogren's) and this has also been reported fairly often in neuropathies caused by other autoimmunities, particularly those ANA and celiac/gliadin related.

[Hermes]

Originally Posted by Sheltiemom

To the SFN folks,

Decided to search "idiopathic small fiber neuropathy prognosis" tonight, and WOW. Could not believe what popped up.

Small fiber neuropathy: A burning problem - an abstract by Cleveland Clinic docs Jinny Tavee and Lan Zhou.

Lan Zhou, M.D., PhD. is the one who did my skin punch biopsy in January. Was stunned when I read this.

Why my CC neurologists never had me back for a follow-up appointment I cannot imagine. I'm upset. They are right down the hall from where the biopsy they ordered was done. Guess it was because all of my tests showed up negative, and I couldn't tolerate the usual meds for the burning pain. They never even mentioned there were any other modalities.

This afternoon (before I found this abstract), in an effort to try anything that might put me in good enough shape to go on vacation while plowing ahead with the supplement regimen, I searched Cleveland Clinic on-line and found the chronic pain department. Spoke with one of the nurses, told her of the SFN Dx, and she explained the different treatment modalities. Will be going as soon as they call with an appointment. She offered no guarantees. Of course I had to first be cleared by a financial consultant. Somebody tell me it's not all about the money.

This abstract describes me to a "T." Because I have the non-length dependent, the face/scalp and some areas of the trunk are also involved. Still don't really feel as if I have Sjogren's because the other stuff that manifests with it is absent and the labs for it all negative.

Interesting. I have diffuse large fiber neuropathic pain, at least that is what my neurologist put on the referral form for the Johns Hopkins Balustein Pain Treatment Center. I'm headed up there the end of Sept. I've been getting burning up my back recently in addition to the legs and feet. Thanks for the info and good luck at the Cleveland Clinic.