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Hello! Thank you for taking the time to read my question. My apologies for being too vague if I am. There was some mentioning about the jugular vein having an abnormality. I hope I remember right in thinking it was said that the patient can actually feel it. I know I sound strange but asking anyways. If it was in fact said as I described is that a marker for vEDS? I totally feel something in left jugular and have since I was young. It is soft and moveable. It is a spot that is slightly larger in diameter and somewhat rounded. My father had the same. Doctors never feel it. No images done for it either.
Hi Amanda, Rather than try to live in fear about your vessels (or guess if what you are feeling is a vascular abnormality), I think most folks would be tested for vascular EDS (and perhaps Loeys-Dietz). It is one of the conditions that geneticists can easily screen for. Results of testing may give you a lot of peace. You could also get some imaging done, if you are worried about abnormalities. How does that sound? 😉
I have requested both but doctors denied either for me. Now I do not have insurance. This does sound like a great plan. Maybe one day I will be done sifting through doctors and find one willing. So then nobody can feel the abnormalities on their own?
Doubtful (although that would be great)… I wonder, though, if you were denied because you didn’t have the facial features or family history? Hopefully, you’re in the clear! Vascular EDS is rare, but Hypermobile or Classic EDS is not. There are MANY vascular issues unrelated to genetic defects, and your doctors will be looking for signs and symptoms of those disorders before running a lot of tests, likely.
I was denied cause they didnt feel anything. That was before EDS diagnosed. My family history was considered suspicious. I was cleared for vEDS for normal echo.
You will probably have to travel to see a geneticist who is very familiar with EDS diagnosis.
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