After waiting for a year and a half, I finally was able to see a Geneticist last Friday. My autonomic specialist had already clinically diagnosed me with EDS, but we needed to see if any testing was warranted. Cross the t’s and dot the i’s kind of thing.
So it’s official, I have hEDS. The Geneticist spent two hours with me. It was so refreshing to hear someone who was connecting the dots between my dysautonomia and Ehlers-Danlos. We also did the pharmacogenic testing for analgesics. Surprisingly, I should be getting results by tomorrow~ish. I figured it would take six weeks or some long amount of time. My PCP was happy this morning when I saw him because now he has something that is concrete; not that the neurologist didn’t know what he was talking about, but this was straight from the horse’s mouth.
Is life different now? No…I’ve already adapted as much as possible and will continue to protect my joints and all the connective tissue as best I can. It is nice to have someone else that is 110% on your side and is backing you up.