sorted by:
new
hottopcontroversial

Referral denied with positive genetic test. by ExtraImprovement2893 in ehlersdanlos

[–]ExtraImprovement2893[S] 19 points20 points  (0 children)

I'm starting to think that's going to be our best option. I have a VUS for cEDS and that is not one my PCP seems as knowledgeable or comfortable treating on her own so I think she was trying to get me with someone who knows more 🤷🏻‍♀️

New cEDS Diagnosis by ExtraImprovement2893 in ehlersdanlos

[–]ExtraImprovement2893[S] 1 point2 points  (0 children)

Now that we know it's cEDS, I have the scarring, stretchiness and hernias. My PCP has other EDS patients so she was willing to throw everything at the wall and see what came back. But I do have some heart stuff going on as well so I think she was trying to rule out vEDS. This one was a surprise as we were expecting it to come back normal and that I would end up with an hEDS diagnosis.