Thanks so much for replying Dr Diana
I’m hoping to get hold of the actual MRI soon (but I suspect it will take a while, given how long it took to just get hold of the notes etc). I did see a geneticist a few years ago to rule out vascular EDS. Apparently mine didn’t match with the 6 most common forms of arterial rupture – the COL3A1 seemed to be clear, although they kept some blood on file in case it was something that hadn’t been mapped yet. I’m not exactly how all that works. So I’ve been left with “we think you’re a bit of an unusual bird, but we don’t know exactly what it is, but it may be/probably is in the EDS spectrum”… I’m not so concerned about me, but more about establishing a diagnosis for 1 of my 3 kids who seems to have more features than I would have done at that age.
In the meantime, I will ask my General Practitioner (I’m in Australia) for a referral for a second opinion!! Thanks so much for your input and wisdom 🙂 I really appreciate it!