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Small nerve fiber neuropathy

AnnNY
AnnNY

I have noticed that many members are have neuropathy. It seems to me that many symptoms have been thrown into the "fibro" diagnosis that were not there when I was diagnosed before some of you were born, I'm guessing. I think I have graduated to multiple autoimmune disorders, including polyneuropathy, although I never know when some doc may want to pull out "fibro" again. I continue, though, to interested in fibromyalgia and suffer from many of the same symptoms of everyone else.


Dr. Oaklander in Massachusetts who did one of the original studies about fibro and SNFN, has a new study about SNFN and a treatment called IVIG. To get it you would have to ask for a biopsy to diagnosed SNFN, and a neurologist or rheumatologist who would fight for you to have the treatment approved by insurance. This study may help that.


https://medicalxpress.com/news/2017-11-autoimmunity-underlie-newly-painful-nerve-damage.html


The first article is cited at the bottom of the page.


I have always had to pro-active in getting doctors to understand my illness, and bringing in studies has been helpful.




BlueSky
BlueSky
That's a huge discovery! I am wondering how I can get tested. My gut problems make me sooo miserable and doctors have no idea what causes it. They're also miffed by my sjogrens symptoms (another annoying problem) because my ANA labs don't show a real positive for auto immune issues. But the chronic dry mouth and dry eyes are severe. Strangely when I tried a lupus medicine called plaquenil, it really helped. So that's why the doctors are miffed. Sadly I had to stop due to it upsetting my stomach.
AnnNY
AnnNY
I was first diagnosed with Sjogrens (and lupus and fibro) in the 80s based on no tests, just symptoms. Plaquenil also made a huge difference for me then, although I still had the muscle pain (nerve pain) and insomnia. Recently, I was rediagnosed with Sjogrens. This was based on a blood test that there is not completely accepted. Also, I had the Schirmers eye test, which I would guess you have had. Some people are diagnosed by a salivary gland biopsy. The biopsy for SNFP is just a biopsy of a piece of skin where they examine those nerve fibers. You would likely have to ask for it.

Here is an article of Sjogrens and neuropathy:

https://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/

They say that fibro also occurs with Sjogrens, as well as other autoimmune diseases. I am wondering if a lot of people with fibro are just not tested more than the more commonly known autoantibodies.

I would say based on my experience is that once you have the fibro diagnosis they want that to be the end of testing. Having improved on plaquenil was helpful to getting them to keep trying. (Or if you have improved dramatically on prednisone.)
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