I really just recommend going to a different doctor if they won't check you out seriously. Especially if they're not recommending other options for you, if you're dealing with the side effects of it. Good luck!

Ask them to make a note in your chart about refusal of exploring this diagnosis. I’ve heard that usually kickstarts the process because they don’t want to have that note in your file.

Geneticists can be a resource, even though it doesn't have a genetic marker they can sometimes diagnose it. I'm waiting on my appointment now (a fun 3 year wait) but I was able to get a hypermobility spectrum disorder diagnosis from my rheumatologist. It is treated the same and the new thought is that they might be the same thing just with different criteria/severity