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Pending Sjogren's Diagnosis and Doctor Worries

Autoimmune Diseases | Last Active: Jul 21, 2023 | Replies (18)
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@windyshores

What blood tests have you had? If your fingers turn blue it sounds like Raynaud's which I have been told happens with lupus, scleroderma and by itself. I just had these tests at a rheumatologist and my PCP has ordered them too: ANA (antinuclear antibody) and Scl70 (scleroderma) and anti-centromere (also scleroderma). A test for rheumatoid arthritis might be helpful for you. Then sed rate and CRP for inflammation, several other tests.

It is easy enough to get these blood tests.

As soon as you mention dry eyes and mouth they suggest Sjogren's. These docs can be frustrating. My palms are tight and fingers are curling and docs are all saying something different. Unfortunately it takes time to get the right doc and diagnosis but you will get there. (Do you get sick in the sun?)

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Replies to "What blood tests have you had? If your fingers turn blue it sounds like Raynaud's which..."
autowren | @autowren | Jul 17, 2023

Hey there! It's funny that you mention Raynaud's - my first doctor was originally concerned I had a circulation issue, but then when those tests came back normal and my inflammation appeared, everything started to click. Aside from fatigue, Raynaud's was the main thing that sent me to the doctor first. I don't really get sick in the sun; at most, I think it just makes me pretty tired/sleepy.

So far, it looks like my provider ordered a CBC with auto diff, a comprehensive metabolic panel, a urinalysis, and a uric acid test. I believe he mentioned the possibility of getting labs for blood tests specific to RA and lupus, so I'll definitely follow up with him on that! I'm just a bit worried that because my fingers aren't inflamed at the moment (just some pain when opening jars at times and fatigue) that our conversation won't go too far, but it doesn't hurt to try. I'll admit that it worried me a little bit when he hooked on my dry eyes/mouth when those were the symptoms I was least concerned about (and never really discussed with prior providers).

Thank you so much for responding - you've given me some ideas for things to ask my provider about. I wish you the very, very best in your journey towards wellness. < 3

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