NEED HELP FINDING AN EDS DOCTOR:
I was officially diagnosed with EDS in November. I was diagnosed with POTS about 5 years ago. I found a fantastic POTS/electrocardiologist in Dallas (where I now live) that recognized the symptoms of EDS and sent me to a very knowledgeable geneticist that diagnosed me with 2 forms (classic and a very rare familial vascular form).
My problem is that I can't find a doctor that is knowledgeable about EDS. My POTS symptoms have taken a side seat (backseat is pushing it ) to the pain caused by my hip and back degeneration. I'm taking no pain meds and I'm in excruciating pain. I haven't been able to work in 8 workdays.
Does anyone have a Dallas area doctor that at least knows what EDS is and can help with the management of my pain? Even my POTS doc is at a loss.