Quote:
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?
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Hi there, you have alot going on too. I feel for you.
I'm sure with all those results there is no doubt significant autoimmune activity.
I'm sure others on here with sjogrens can confirm that you don't necessarily have to have dry eyes/mouth. There is a website called sjogrens world and I've read some member threads - there are individuals who do not have the dryness.
With all those confirmed results, are you on any immune suppression /treatment? You definitely have enough evidence of autoimmune activity.
Im really surprised a muscle biopsy showing changes is ignored over a negative EMG. Is it possible that the biopsy does not demonstrate denervation but rather shows changes as a result of something else? Possibly inflammatory damage or connective tissue changes?
Have you had the lip biopsy to support a Sjogrens diagnosis?
I'm sure others with sjogrens on here will give you more detailed information.
I have most those symptoms you describe. (I have almost everyone's symptoms - I know) . I understand exactly how you feel with the facial nerve problems. My teeth are awful like you. and my nasal passages. My eyes burn and inner mouth lining and lips can inflame and get so dry. My nasal passage is horrendous. I understand, it's really hard going when its everywhere imaginable.
I hope you have a half decent rheumatologist and neurologist.