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Recently diagnosed with autoimmune disease - looking for support
Autoimmune Diseases | Last Active: Sep 10, 2022 | Replies (31)Comment receiving replies
I have a form of Vasculitis that was diagnosed by a skin biopsy in 2015. My blood work has always been perfect! This disease (Polyarteritis Nodosa) is rare and unfortunately most health care providers have not seen it so they don’t have a clue what to do with me.
I’m now working with my local Rheumatologist who is consulting with a Mayo Rheumatologist because I have some new issues.
Autoimmune conditions are tough. If you are anything like me, I look like a picture of health on paper, but my physical body tells a different story!
I’ve had to learn about my situation and teach my doctors!
They don’t always receive my instruction well, but so what. There are lots of other doctors out there…
Best of luck to you. You are not alone!
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Thank you @SusanEllen66 for sharing your story, I hope you are doing well!
I understand when you say you that you look perfect on paper, I had tons of lab tests and diagnostic tests done and always got back with a "nothing's wrong with you" but I still couldn't get out of bed some days from the pain. Hopefully my next rheumatologist will take the time to dig a little deeper into this.
Thank you again for sharing!