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Sjogren’s Syndrome – Introduce yourself and meet others
Autoimmune Diseases | Last Active: Dec 3, 2023 | Replies (621)Comment receiving replies
Hi
I was diagnosed at Mayo six years ago. My first symptoms were dryness, as is common. I was sero negative, the bloodwork was not conclusive, so Mayo did a lip biopsy, the gold standard!, which was positive.
A month later, I had optic nueritis in the left eye, very unusual with Sjogrens. Over the years I've developed Renaulds, Sun Allergy, Severe Dry eyes and more than normal arthritis. A few months ago I ended up with Optic Nueritis AGAIN!
That was the point I decided to go to Mayo for care long term. After extensive testing, a spinal MRI, ect. it was decided the optic nueritis is autoimmune and related to Sjogrens. I have seen a nuerologist specializing in autoimmune issues and a rhemetologist who I see now every six months.
I am in three clinical studies at Mayo, two with autoimmune nuerology. We need more research and better treatments!
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@rarelybees2889 — I've been in several heart studies at Mayo Clinic Rochester years ago that actually changed my medication for blood pressure based on a diagnosis change to hypertension. They do a great job in research. Last year I was in a flu shot study where they took some blood samples before and after giving you the flu shot and then I came two additional times to give a blood sample and vitals. I too would like to see a lot more autoimmune research studies (and the results!).