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 I have had much the same symptoms as you, progressing and changing slightly for about seven years now and had a lip biopsy last year which showed 100% positive for Sjogrens (i.e all five minor salivary glands removed were riddled with foci (lymphocyte clusters). I too had paired oligloclonal bands in my CSF. However I am completely devoid of tears, suffer unpleasant GI features at both ends, have burning lips and gums, cranial neuropathy, very diffuse small fibre neuropathy with Raynaud's phenomenon.
I have had a normal EMG and NCS but am starting to get blocked salivary glands and am struggling increasingly with a very dry mouth. But my neuro symptoms started well before the severe eye and mouth dryness. My punch biopsy a few years ago was negative - but my neurologist says this is not significant to her because of my symptoms, history of autoimmunity, oligloclonal bands and lip biopsy result.
I was previously diagnosed and treated aggressively for RA five years ago but this was probably misdiagnosed (Sjogrens often mimics RA with bilateral joint pain) and my Sjogrens is now thought to be primary. My ANA is a clear positive with a nucleolar pattern. There is quite a strong possibility that I also have Scleroderma so I'm going to be tested in April for this, using a nailfold cappililiary test. My ENA panel is negative, meaning that I have seronegative autoimmunity. My sed rate is often very high. I am eight weeks into taking Cellcept but I don't yet feel much benefit - but no side effects at all either which is a first for me.
Sorry I'm just on my way out but wanted to respond quickly. Hope this helps.