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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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@johnbishop

Hello @rarelybees2889 -- Welcome to Connect. There is another active discussion on Sjogrens where your post will receive more visibility and you can meet other members discussing Sjorgrens. I'm tagging our moderator @ethanmcconkey to see if we can move your discussion here:

> Groups > Autoimmune Diseases > Sjogrens
-- https://connect.mayoclinic.org/discussion/sjogrens/

You may also want to join the following discussion for Hashimotos:
> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis and IVIG Treatment?
-- https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/

Are you able to share some of your symptoms and anything you have tried for treating the symptoms?

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Replies to "Hello @rarelybees2889 -- Welcome to Connect. There is another active discussion on Sjogrens where your post..."
Langold | @rarelybees2889 | Sep 21, 2019

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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