Originally Posted by Pyr2

Ive posted before on this journey- suffering from almost 3.5 years of neuro symptoms both central and peripheral. I was diagnosed with an axonal and demyelinating neuropathy at NYU - I did have a muscle biopsy which showed changes but then I went to Upenn and they said the EMG was normal and they wont diagnose based on muscle biopsy. I had a skin punch which showed low normal fibers so maybe I have SFN starting...

Anyway, I ask about Sjogrens b/c I have been ANA positive (low) for years and now my SSA has turned positive. I also have super low complement 4 (its at a 5). Sometimes my complement level 3 is low too.

I know that SSA can mean other things but does it always mean autoimmune?
Does the level actually matter or positive is positive? Does it matter that I dont feel dry eyes or mouth?

My eyes keep tearing/welling up on their own and I hautonomic issues while sleeping - vertigo, nausea. I have burning mouth syndrome and constant little pricks in my lips and cheek and tongue too, like they are about to go numb. THe corners of my eyes burn and I feel pulling sensations behind them. I have HORRIBLE facial pain in my teeth and jaw. My head constantly feels weird pressure sensations - pulling, shifting, moving behind my eyes. My body buzzes, zaps, tingles, bee stings, feels numb, etc.

I had a spinal tap which showed oligoclonal bands which demonstrate autoimmune/inflammatory activity in my CNS. In short, Im a mess and have no idea whats going on!

Any ideas, anyone relate?