I totally agree getting a DX is vital. My question is being that I was DX’ed by my neuro, not by a genetic specialist,is there any additional benefit of getting a DX from a geneticist?
Though it seems it doesn’t even matter a lot of the time in the medical community if you do have an EDS DX because most doc’s have no idea what it means. I saw my GI doc this week and asked him if my EDS couldn’t be a part of the gastro problems I am having. To which he said that EDS ONLY effects joints, making them hypermobile. Period. I was stunned. This guy is older, near retirement age, so in all his decades of practice he has never learned about EDS and/or never had an EDS patient before me? Really? Wow. I know I need to find a new GI doc now, need one who knows about EDS, but how does one go about that? It can get so discouraging.