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Sjogren's likely - how to prepare for rheumatologist

Autoimmune Diseases | Last Active: Nov 26 7:12pm | Replies (10)
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@bluesmom

My big question is whether or not I actually have Sjogren’s based on the new test results and ongoing symptoms. My PCP now believes I do but I’m looking for confirmation from the rheumatologist. Also, given that I’ve already made so many lifestyle changes to accommodate my symptoms (diet, exercise, therapy, getting a less stressful part time job etc), will there be anything else I can do to improve the disease progression? Apologies. I realize my concerns are very large and fairly unanswerable. I’ll try to ask a more direct question next time I post!
Thank you.

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Replies to "My big question is whether or not I actually have Sjogren’s based on the new test..."
Becky, Volunteer Mentor | @becsbuddy | Nov 22 6:00pm

@bluesmom Please don’t ever think you need to apologize for something you may have said on MCC. We allow and encourage rants all the time!

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deborahyost3 | @deborahyost3 | Nov 23 7:20am

Hi, I'm Deborah. I have primary sjogrens and degenerative arthritis. I have been on hydroxychloroquine for my sjogrens for about 5 years and I have been on low dose naltrexone for both conditions for about 3 years and both of them help.
I just wanted to mention that I actually got my diagnosis confirmed, although either sjogrens or rheumatoid arthritis or lupus were all suspected for several years- when my retinal specialist had my eyes dilated and was looking at my retina for an entirely different condition(wet macular degeneration) And he said something about my sjogren so I said I don't have sjogrens he said oh yes you do.
And he had a conference with my rheumatologist and then I got my diagnosis.
So! I never did have the lit biopsy but apparently there were changes in my retina and ocular nerve that you only see with sjogrens.
That's an unorthodox way to get a diagnosis -but that's how I got mine.

Good luck! Having a rheumatologist that knows you. Have
"something" but they're not sure what and will proactively start treating you while they figure out what the heck it is is a good sign.

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