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Old 02-03-2016, 09:29 PM #3
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en bloc en bloc is offline
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Location: Shenandoah Mountains, VA
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en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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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 Sjogren's. 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.
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