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Anyone out there with Behçet's and vasculitis?
Autoimmune Diseases | Last Active: May 21 12:58pm | Replies (11)Comment receiving replies
@larak, I know that @richardrr is looking to connect with others diagnosed with Behcet's.
- Behcet's disease: Would like to connect with others https://connect.mayoclinic.org/discussion/behects-disease/
Using search I also found discussions related to vasculitis and to ascending aortic aneurysm to help you connect with others
- vasculitis discussions: https://connect.mayoclinic.org/search/discussions/?search=vasculitis%20
- aortic aneurysm discussions https://connect.mayoclinic.org/search/discussions/?search=ascending%20aortic%20aneurysm%20
Fingers crossed for a good relationship and answers with the new rheumatologist.
Replies to "@larak, I know that @richardrr is looking to connect with others diagnosed with Behcet's. - Behcet's..."
Thank you very much.
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Thank you so much! I will look into these discussions.
I do not know whether the journey is over yet. I know the rheumatologist was quite up front about, "I don't prescribe these meds lightly because I don't want to shut down your immune system." And I get it.
But it is more than just the aneurysm. It is all the symptoms of Behcet's and not even knowing if anything else is affected by the vasculitis. They've been pretty dismissive thus far of the dilated main pulmonary artery measuring 3.4 cm. (Norm: 2.7 women, 2.9 men. I am a woman, AFAB.) And pulmonary artery aneurysm is usually the killer in Behcet's.
It's frustrating, for sure. But I am hopefully closer to some solutions.