Just Diagnosed With Probable Eds

[photchkiss]

Hello to all:

Well, I saw a rheumatologist yesterday, and she said that my concerns regarding ehlers-danlos syndrome (EDS) are well founded. She said she has only seen 2 borderline cases in her career--and she used to be on staff at Mayo. But that my case was the clearest she has seen. She did not know much about the disorder and she had never heard of POTS.

So, I'm pretty convinced now that I have EDS and that it's the cause of my POTS.

Again, it's thanks to the posts on this forum that I explored the EDS world.

Two questions:

Can those of you with diagnosed EDS suggest the clinic and/or doctor that is the recognized national expert in EDS?

Do you think I should see someone like Dr. Grubb for the POTS and another doctor for the EDS--or is there one doctor that can handle both?

Thanks,

Joe

[Lukkychrm42]

Both my new cardiologist and my rheumatologist picked up on it right away- during my first appointments. I was referred to a geneticist to make sure and to rule out other possibilities (besides hypermobility type).

I'm really lucky in that I am not having (*knock on wood*) debilitating dislocations, breaks, healing problems and stuff at the moment, so I usually just see my cardiologist and a physical therapist. If the pain starts to get worse and I need prescription strength meds for it, I'll probably just go to my PCP. It's just that since there's not really any pharmacological treatment for EDS, unless you're needing major surgeries or care on injuries and such, there doesn't really seem to be much they can do, you know? But that's just my experience so far.

Good luck on your journey with this, Joe.

[Poohbear]

I do not have any suggestions or answers to your questions but hopefully someone here will be able to give you some input.

I just wanted to say I'm sorry you are dealing with all of this and I hope you get some answers soon