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RM states I don't have Sjogren's

Posted by seneca @seneca, Mar 4, 2022

I had my first visit the a RM Monday. Today the nurse called and said my blood work was OK and the xrays didn't show any nodules so the dr. said it was osteoarthritis. Due to my symptoms I think he was sure it was sjogrens when I left his office. I'm not at all convinced it isn't sjogren's due to my symptoms that all started at the same time. Dry mouth, eyes, joint pain, etc. My initial blood work that was taken at by my PCP in November showed positive for RA and the ANA screen was positive. The way to nurse talked there would be no follow up even for osteoarthritis. Wondering if anyone who was seronegative ever got a definitive answer that they had Sjogren's and if so how was it determined.

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jetsetter | @jetsetter | Mar 5, 2022

You will find tons of resources here: many of us have had a time getting diagnosed. Don’t give up!

https://www.smartpatients.com/communities/sjogrens-syndrome

This site was created by a doctor with Sjogren’s lots of resources here!

https://www.sjogrensadvocate.com/

Good luck!

REPLY
1 reply
lilymol | @lilymol | Mar 5, 2022

Hello I am seronegative for Sjogrens. All doors were closed to me locally because of this and my PCP and I knew something was wrong . My PCP eventually referred me to Mayo through the physician referral program. Mayo docs listened, completed a very thorough exam, performed biopsies/blood work/tests. So I had a positive lip biopsy, positive tilt table (POTS/dysautonomia), positive leg punch biopsy (SFN) & positive for livedo reticularis (and the usual dryness and arthritis). Don't give up! My recommendation is to go to a large university hospital or Mayo or a similar facility. Great Resources: Sjogrens Advocate, Smart Patients, and Sjogrens Foundation.

REPLY
1 reply
seneca | @seneca | Mar 5, 2022
In reply to @jetsetter "You will find tons of resources here: many of us have had a time getting diagnosed...." + (show)
@jetsetter

You will find tons of resources here: many of us have had a time getting diagnosed. Don’t give up!

https://www.smartpatients.com/communities/sjogrens-syndrome

This site was created by a doctor with Sjogren’s lots of resources here!

https://www.sjogrensadvocate.com/

Good luck!

Jump to this post

Thank you for the information

REPLY
seneca | @seneca | Mar 5, 2022
In reply to @lilymol "Hello I am seronegative for Sjogrens. All doors were closed to me locally because of this..." + (show)
@lilymol

Hello I am seronegative for Sjogrens. All doors were closed to me locally because of this and my PCP and I knew something was wrong . My PCP eventually referred me to Mayo through the physician referral program. Mayo docs listened, completed a very thorough exam, performed biopsies/blood work/tests. So I had a positive lip biopsy, positive tilt table (POTS/dysautonomia), positive leg punch biopsy (SFN) & positive for livedo reticularis (and the usual dryness and arthritis). Don't give up! My recommendation is to go to a large university hospital or Mayo or a similar facility. Great Resources: Sjogrens Advocate, Smart Patients, and Sjogrens Foundation.

Jump to this post

Thank you for replying,

REPLY
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