u/Hopeful-Surround-995

Her neurologist said he thinks she probably has it and that’s what he’s going with until the test proves it or disproves it as the other “EDS” ones have been ruled out by testing.

She’s 40 years old. Has no family history at all of vEDS, Doesn’t have the classic skin issues at all. doesn’t have veins showing, Doesn’t bruise easily, has almost no visual classic face features of it. Had no issues or any signs of anything until earlier this year when she had an artery dissection at the back of her neck while she was under intense stress ever since that she has had the regular symptoms of a artery dissection (neck pain, some dizziness, headache, nausea etc.) but it’s healing well the scans are showing and the rest of her arteries look as good as they can from what the scans visually show.

She also had a cornea tear that she had eye surgery for. Because of both this and the neck dissection this is the 2 reasons why he thinks she has vEDS. If she does have it I really hope it’s the Null mutation (which is where the COL3A1 gene is half producing and not fully turned off - so not AS bad) From what I’ve read if vEDS shows up later in life and you don’t have the classic features then it points more towards that.

I know she needs the testing to confirm. She’s now awaiting the testing but it’s going to take many months and the thought of this is killing me. Thank you for the help and insight. Much appreciated.

Her neurologist said he thinks she has it as the other “EDS” ones have been ruled out by testing. She’s 40 years old. Has no family history at all of vEDS, Doesn’t have the classic skin issues at all. doesn’t have veins showing, Doesn’t bruise easily, has almost no visual classic face features of it. Had no issues or any signs of anything until earlier this year when she had an artery dissection at the back of her neck while she was under intense stress ever since that she has had the regular symptoms of a artery dissection (neck pain, some dizziness, headache, nausea etc.) but it’s healing well the scans are showing and the rest of her arteries look as good as they can from what the scans visually show.

She also had a cornea tear that she had eye surgery for. Because of both this and the neck dissection this is the 2 reasons why he thinks she has vEDS. If she does have it I really hope it’s the Null mutation (which is where the COL3A1 gene is half producing and not fully turned off - so not AS bad) From what I’ve read if vEDS shows up later in life and you don’t have the classic features then it points more towards that.

I know she needs the testing to confirm. She’s now awaiting the testing but it’s going to take many months and the thought of this is killing me. Thank you for the help and insight. Much appreciated.