← Return to Sjogren’s Syndrome – Introduce yourself and meet others

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@cblue

I likely had this for a few years, but was newly diagnosed with a lip biopsy. I had a more severe flareup, which led to biopsy, but vasculitis and other signs did not come up in blood work. I am in more pain and have more severe and a wider range of symptoms than I expected. Rheumatologist seems reluctant to meet before our appointment in late January (made in June when she thought she had ruled out Sjogren's). Would like to know more about what to expect and perhaps find another provider in the NYC Metro area. How can I connect with other Sjogren's members?

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Replies to "I likely had this for a few years, but was newly diagnosed with a lip biopsy...."

@cblue Are you living in the New York area currently? This website might have some leads on finding other patients:
https://www.sjogrensadvocate.com/
The Genetic an Rare Diseases department within NIH should be able to help you find a new rheumatologist:
https://rarediseases.info.nih.gov/
I hope this helps!