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Sjogren’s Syndrome – Introduce yourself and meet others

Autoimmune Diseases | Last Active: Dec 9 10:31am | Replies (661)
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@cindylb

I had all those symptoms for years and all my tests were normal. Not now....all my tests come back as Sjogren's. I pushed hard but couldn't get any medical help....but keep after it. The sooner you address each of the symptoms the better you can feel, although it's progressive I'm hoping to be aggressive with treatment and reverse what I can. If you don't feel 'normal' you're not 'normal'. Advocate (as exhausting as it is).

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eileenb1022 | @eileenb1022 | Aug 4, 2023

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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