Geneticist only addressed hEDS

A month or two ago I went to a geneticist to be evaluated for connective tissue disorders and was only tested for hEDS (which i met criteria for). This is fine and all, but I have symptoms that are extremely debilitating and fit other HCTDs.

For example, I have vascular and gastrointestinal issues, as well as severe foot deformities, so I was hoping to discuss clEDS.

But no. I was sent home with my hEDS label and a pain management referral.

I’m extremely grateful that I’m in the system and can possibly get some relief now, but also I’ve had near-fatal medical complications and want to know whether or not I need to be managing certain things. Agh navigating the healthcare system is so frustrating.