[QUOTE=en bloc;1197283]I'm not sure where the post was first made, but you recently asked about this (yesterday, I believe) and I posted a reply. You have since removed that post.

Here is a copy of what I said:

The test you had (from Immco) is brand new. I'm not sure how accurate it is. Some doctors say it is, yet others say it hasn't been backed up with clinical studies, etc. It's mostly used by ophthalmologists according to what I've read. Rheumatologists and neurologists use the serum SSA & SSB markers for diagnostics...AND the lip biopsy for confirmation (as 40% of serum labs are negative, even though the patients really do HAVE Sjogren's).

It certainly sounds as if you have a possible autoimmune basis to your SFN but odd that you don't have dry eyes/ or mouth (according to what you stated in the other post), so maybe it's not . Whatever is causing it, you need aggressive treatment before your nerve damage becomes permanent. I know IVIG sounds scary, but it really isn't that bad and most people tolerate it just fine.

You don't mention any other treatments you've tried. What have you tried? Before considering IVIG or other big guns, you need to try meds like Neurontin, Lyrica, Cymbalta, Nortriptyline, etc. I'm a bit shocked that you have dealt with this for 5+ years and have no treatment! Please tell me this isn't the case and that I've misunderstood you.

Hi En bloc, Thank you for your response. Sorry you had to re-post. I did have my post as a response. I didn't know how to start my own thread till today.
I did not realize the testing for Sjogrens from Immco Labs was brand new. I'm not even sure how to respond to that. I'm already scared and confused. I feel like I can not trust or believe any of these Doctors anymore.

My Neurologist made it sound like he has been using Immco for this test for a long time. My Rheumy wanted me to have a lip biopsy, but the Neurologist said the lip biopsy was not accurate. like the skin biopsy, he said they could "miss" when doing the biopsy and not get diseased fibers. So I could get a false-negative. He used my last "normal" skin biopsy as an example. He says he always uses blood tests, that they are more accurate. My original blood work from more then one Neurologist & Rheumatologist use the serum SSA & SSB markers, they always came back negative. This Neuro said he was testing outside the box and had me test with Immco.

I try not to think about my nerve damage becoming permanent. I guess I try to stay positive and always think I will start to get better before I get any worse. My Neurologist mentioned IVIG therapy. It scares me so much. I had a Spinal Tap last week, still waiting for the results. I think at my next appt he will bring up the IVIG. I know its expensive and I don't even know if my Ins will pay for it.

I did try all the meds you mention like Neurontin, Cymbalta, Nortriptyline, Amitriptyline, Tegretol, Trileptal, etc. I either couldn't tolerate the SE's or the med didn't work. I take 300 mgs Lyrica now (had to lower dose bc of SE's), Klonopin, Tramadol as needed (doesn't help) and use Lidocaine patches for burning feet. You mention I should try these meds for treatment before I consider IVIG. Aren't these meds we talked about just for pain? And the IVIG is a type of treatment? What other "treatment" options are there? I never tried prednisone. Should I ask about it? Could it help? I'm still struggling with just finding a medication that will help me to get to a functional point in my life. My PM Doctor is giving up on me, literally. Says "he never had a patient with my kind of pain and didnt know what else to offer me"!!

This is all so disheartening and disappointing for me. I was told all of this time that this SFN was unlikely to be Autoimmune mediated. I dont know which is worse , Idiopathic or having some known underlying disease.