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Undiagnosed Autoimmune with back pain, spasms, and stiffness
Autoimmune Diseases | Last Active: Nov 14, 2021 | Replies (91)Comment receiving replies
Thank you again! I just read entirely the link you sent me
That is ME!! Including the robes with my veins! Swelling and hurting and bursting leaving bruises !
And yes my rheumatologist is only looking at my serology although I do have tge anti SSB etc
Last time I saw him he was dismissive to say the least. He even stretched my appointment to four months, did not want to drain the fluid from my knees ( yes both swollen, painful with Baker Cysyts each .
Now I know! Not see how to approach him!
I am on a Medicare advantage plan
I will go to bed a bit less guilty today. I know I am not making any of it up.
Thanks a million Shigren’s advocate
By the way the American Assiciation of rheumatologicals diseases is also strict :
It is not Sjogren’s without the anti SSA but I know what I feel and see and feel! in my own body
Thanks a million again
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I’m so glad Sjogren’s Advocate has been a revelation for you. It is the most helpful and supportive website for those of us with Sjogren’s. It was started by a doctor who has Sjogren’s, as she was frustrated by the lack of recognition by rheumatologists of the systemic symptoms that Sjogren’s frequently causes. I have pretty much your same symptoms. Fortunately my neurologist diagnosed me and has been helpful.
As @jetsetter recommends, I hope you can find a rheumatologist who will help you! Sjogren’s Advocate has guidance documents for rheumatologists, perhaps take these to your rheumatologist or primary and ask for a referral to a different doctor!
Be strong and remember it’s your body! You know your symptoms!