Tests for vascular EDS negative

[Silvergilt]

Whew, well I just got the letter today that the tests came back that vascular EDS for me was 'unlikely'. This is generally good news, but does still leave a lot of questions I have somewhat unanswered, which is still a bit of a bummer. However, I'll take what I can get. I wish everyone here luck, courage, and strength!

[Tillyray]

I am really happy for you that your tests report vascular EDS is unlikely. This is good news🙂.. but I can also understand the down side, that you are still left in the dark as to a diagnosis.. You are on your way to getting your answers, and this is a major step in the right direction.. so keep going, everything will be made clear.. Very best wishes xx

[EOLHPC]

I agree with tillyray.

You've been through so much SG. Getting this report would've upset me if I were you...the term "unlikely" is not much help at all! can't not wonder if the consultant is hedging his/her bets due to the recent revisions in EDS diagnostic criteria etc etc.

Do I remember rightly: Rheumatology has already diagnosed you with hypermobility? Even if you aren't the Ehlers Danlos vascular type, hypermobility itself is a significant diagnosis that can help in better understanding your mix of immune dysfunction & connective tissue disorder and really can help your multisystem medics to understand, treat & manage your stuff more effectively...before my EDS got figured out, my medics all found my hypermobility diagnosis helpful

Courage SG....(but 😍 you've been so brave about everything forever: no need for me to say this)

🍀😘🍀😘🍀😘 coco