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sero negative sjogrens?

Autoimmune Diseases | Last Active: 5 days ago | Replies (56)

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Profile picture for saffronsass @saffronsass

I had symptoms for several years. I was convinced I had it. However, every doctor I saw said I didn’t have it. This included rheumatologists, ophthalmologists, dentists, and I can’t even remember them all. Finally, I saw a new rheumatologist after I had been doing a lot of research on Sjogren’s. What I found is about 30% of people with Sjogren’s are seronegative. This doctor was kind and patient. I told him I had read that having a lip biopsy was the only definitive way to find out if you truly have it. I had to find this out myself, as no doctor ever even mentioned it to me. He agreed to order one for me. Sure enough, I definitely have it. It felt like a weight had been lifted off of me. Someone finally believed me. Since then I have been able to get the proper medication and care. Unfortunately, though, that kind doctor left the area, and it has been very challenging to find a really good one. My suggestion is to insist on a lip biopsy. I did not find it painful, as so many say it is. Wishing good luck to you.

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Replies to "I had symptoms for several years. I was convinced I had it. However, every doctor I..."

@saffronsass yes it is not uncommon for the Drs to say you do not have Sjogrens. Some tests come back negative.
I know I have it.
It is disappointing to know the amount of patients told they do not have it.
We are our best tool!!! Sometimes it gets hard to deal with but I always say someone out there is worse than me. Chin up if anyone has some new info share it in all ears!!!! 😀😀😀

@saffronsass I am seronegative in most tests, including lip bx. However, my ANA is “abnormal “ and sed rate is very high. Schimers is only 2, 3 dental implants over the years and now awaiting 5 more! I have 5 other autoimmunes: Primary Biliary Colangitis, Hashimotos, oral lichen Planas, lichen sclerosis, alopecia. The fact that a Mayo doc stated, “you don’t have Sjogrens,” when lip bx was negative, makes me think I need a second opinion? These symptoms have literally gone on for years. I am 78. Sorry, venting here!