It finally happened: a real diagnosis. I think. 😂

I have had symptoms since 2019 and earlier. I found out about my aneurysm in February of 2021. I knew about my 1:1280 titer ANA (Speckled) since October 2021. I got my whole genome tested sometime during this period and finally found a way to sort my variants by severity earlier this year. Behçet's. I have a few pathogenic and many modifier variants across multiple genes for Behçet's.

Doctors did not find this. I've had a cardiologist, a cardiovascular surgeon, 5 rheumatologists, and the same number of PCPs. All of them knew my symptoms, knew my ANA, and knew I had a 5 cm ascending aortic aneurysm and I still had to be the one to figure this out.

I finally got my current rheumatologist to run the HLA-B51 antigen test: Positive. As I knew it would be.

I'm bringing my portable penis (my husband) to my follow up appointment in case my current rheumatologist attempts to continue with the gaslighting of the past several years. Since I have come to realize that I am seen as an unreliable witness to my symptoms and medical history, having a penis-possessing person in the room may help.

And the only reason I'm seen as unreliable is that doctors were/are annoyed that I kept fighting.

And I was right to keep fighting.

You probably are, too. So keep fighting.