SS or Small Fiber Neuropathy or both ???

[Bettyboop71345]

EMG indicates SFN. Does that mean both ?? Waiting for the report. Rheu. stated continue on Plaquenil and Gabapentin...

[Joaclp]

I have small and large fiber neuropathy and Sjögrens. Doctors continuung to try to figure it out. It is baffling.... All the best for your diagnosis and treatment.

[Bettyboop71345 in reply to Joaclp]

Take good care👍🏻

[Joaclp in reply to Bettyboop71345]

You, too. I was/am too tired to answer in more detail, if that is of interest, but will follow your travails. I know diagnosis and separating out conditions is not an easy process. I've been at it for several years!

[Bettyboop71345 in reply to Joaclp]

It's only been a year for me, so far...I hope you feel better soon. Having bloodwork done today ⁉️ I'll stay in touch....

[Polly91]

Hello Bettyboop

Can I ask what your symptoms are for SFN? My endo thinks I have it and it would be interesting to compare notes on symptoms & treatment. I haven’t started any yet. Thanks

[Bettyboop71345 in reply to Polly91]

Hi Polly, Well, a year ago when I was sick with the flu, I began experiencing a strange sensation. It began on my face. I kept feeling as if I had tiny hairs on my face that I was CONSTANTLY wiping away. It eventually spread and became intolerable. And it caused Xtreme anxiety. I finally went to my PCP. They did bloodwork and I had a Positive ANA. They referred me to a Rheumatologist. Many tests later she began treating me with Plaquenil for Sjogrens Syndrome. This had been determined by a lip biopsy. The se.nsations (paresthesia) had spread all over my body and in some areas sorta felt like pricks. I never experienced pain. A bit of numbness in my toes, but no pain. I had the the SFN test scheduled in December. It's a skin biopsy. The results came in this week as positive. I'm taking 400mg.Plaquenil and 1500mg.Gabapentin. Am doing better. Hope this helps🤞🏻

[Polly91 in reply to Bettyboop71345]

Firstly glad to to hear you are doing so much better. It sounds like you’ve been through a horrid time.

Did you get burning in your face or all over or in hands & feet?

I didn’t know there was a specific test for SFN? Is it the same as nerve conduction test ?

Before the flu did you have any autoimmune conditions?

I’m still trying to figure what is going on with me.

Thanks v much

Polly.

[Bettyboop71345 in reply to Polly91]

No burning at all ! Yes the test is two small punctures into the skin. The first was on the side of my calf and the second a bit higher up. No pain. Local anesthesia. I did all of the nerve conduction studies and they were all negative..The only thing I had prior to the flu was Restless Leg Syndrome. Another difficult illness. I don't know if there's any connection ??

[Polly91 in reply to Bettyboop71345]

Thanks. Gosh you poor thing. What results do the tests actually show? I’m wondering if I should get them done but my symptoms are more burning/heat. How long did you have restless leg syndrome? Yes it is a difficult one & often confused with fibromyalgia or chronic fatigue or Lyme disease.

[Bettyboop71345 in reply to Polly91]

About 6 months or so for RLS, had a great deal of difficulty weaning off r

[Bettyboop71345]

Requip!! Been cleared, no Lyme disease !!

[Polly91]

That’s good. Stay well

[Bettyboop71345 in reply to Polly91]

You too, Polly...