finding and reading any and all poss new reputable info re HMS/EDShypermob has not only in general helped me improve, but once again has poss helped another bendy too
I d passed on info, relevant to her,quite uncommon/unusual(!!!!) and serious case/probs from the "hypermobility, chronic pain..." book and the EDS colloquium vids-she took that to her new neurosurgeon.
he, bless that man!, took her seriously and read and watched (obviously not there and then)- he then ordered mri s to be done with her neck in rather, and def not normally done, positions... and whereas previous "normal" mri had shown "nothing"... these showed that some bones in her neck move "very significantly" out of place.
he now is trying to organise a meet with someone from the nhnn complex spinal unit and prof g to together discuss if this can indeed cause her admittedly some rather strange symptoms and decide what can/should be done
previously the "normal" spine unit( think it was that) at nhnn, as well as pity enough dr kazkaz
had dismissed her idea that cervical instability might play a part/that she had this and had put the symptoms down to stress and yep, bl*^%#} psychosomatisation...