Help please? Doctor Interaction
I’ve read through the pinned resources and diagnosis megathread and disclaimer at the bottom here and didn’t see my exact problem addressed and so I was wondering if y’all could maybe help me? I am new to Kaiser Permanente and finding it really difficult to navigate
Basically, I don’t know what magical magic phrase to say to the medical gatekeepers at Kaiser Permanente to unlock the door to an updated diagnosis (or not, depending on the test results)
I received a diagnosis of HSD many years ago and doctor after doctor discouraged me from genetic testing for EDS, because so many of the symptoms and supports are the same for the worse end of HSD and hEDS. Which, okay, fine, I figured out how to get through life with supports and coping skills and I was happy to keep my Reddit posts confined to r/hypermobility (lol). I don’t have a lot of close family, so I just did what I could and then continued on my way
This year, two things happened - I switched to Kaiser Permanente and also received a very detailed medical history from a distant relative. Given the details disclosed, I now need to find out whether some of my symptoms are caused by a tumor-generating genetic mutation that can cause organ rupture, vEDS which can cause organ rupture, or just comorbidities of whatever type of hypermobility I actually have. I have a kid, so getting the testing done seems like more of a need than a want
But - I don’t know how to effectively ask for the testing at Kaiser? I can’t even get a normie referral for a skin cancer screening (my old doctors were monitoring two moles on my back, which flexible as I may be are still in places that I can’t get a steady look at), how on earth can I expect to actually get a referral for genetic testing??? Like, what do I actually need to include to not be written off this time? It all seems so impossible.
If you’ve had success, particularly with East Coast KP, can you please give me tips?
tyia
Posted Jun 30, 2026, 2:44 AM UTC