Yes, unfortunately, but only if they have a lot of EDS patients and depending on the specialty and severity. I wouldn't see a regular person doctor who didn't take insurance. I've found that the best way to find good doctors is to look on a local EDS group.

I wouldn't go out of network to get diagnosed if at all possible simply because it's a waste of money. Try to find a geneticist who takes insurance and who is familiar enough to diagnose EDS.

I have found it incredibly expensive but unfortunately very worth it to see PTs and osteopathic doctors who do manipulation who don't take insurance. I think this is because it just simply takes more time and knowledge to handle the musculoskeletal issues with EDS. Most people might have one joint that hurts. With EDS, it's a whole puzzle. I wouldn't let anyone touch my neck who hasn't worked on the necks of a lot of people with EDS. As far as manual work, there's just more stuff to work on. PTs who take insurance also tend to look at parts of the body in isolation, which may work with regular people, but not with EDS. I consider this to be a flaw in the insurance model. It's like how some insurance limits how many sessions of PT you can have. EDS just doesn't work like that.

For PCPs, it just depends on whether you can get what you need in 15 minute appointments. PCPs just don't get paid that much and even regular people PCPs are increasingly opting out of insurance. My PCP takes insurance, but I also don't think she's very good. I definitely don't expect her to do anything as far as my EDS.

In other specialties, I think it depends a lot on how complicated you are.