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Sjogren’s Syndrome – Introduce yourself and meet others

Autoimmune Diseases | Last Active: Dec 3, 2023 | Replies (621)
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@eileenb1022

I just had bloodwork repeated o Monday. Got results earlier today all negative. I can't believe it. The dry eye specialist I saw referred me to a rheumatologist for a lip biopsy. After a week of phone tag I find out today the this rheumatologist said they don't do lip biopsies anymore and refuse to see me for being seronegetive but the ent office I went to yesterday said I could get lip biopsy there so I'm waiting to hear back. The dry eye specialist said I had extremely dry eyes and neuropathy in my eyes. I think I also may have it in my legs and feet as I have to wear compression stocking as my legs and feet hurt. I do have a telehealth appointment with a rheumatologist from NYC I heard he was very good. So fingers crossed.

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Replies to "I just had bloodwork repeated o Monday. Got results earlier today all negative. I can't believe..."
suetex | @suetex | Aug 5, 2023

I too had a lot of unexpected "negatives" in my work up (Sed rate,CRP, ANA, HLAB27) but my new Rheumatologist found antibodies against my salivary glands and that plus my symptoms equalled Sjogren's to her. Good thing too, it also explains the weight bearing balance problem in my legs that I have had for over 2 years. Growing weakness, too. Short Fiber Neuropathy she called it and Sjogren's can do its own version of it. Also low IgG which may be part of the treatment. I will let you know. Don't stop your search. Nag, if necessary.

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