Is Dr. Suleman the doctor who ‘tied this all together’ and diagnosed you?
My genetic doctor made recommendations for several specialists who were supposed to manage the various body systems: cardiologist, orthopedic, etc etc etc. My problem has been that the specialists don’t know what EDS is. Complete disconnect!
Who diasnosed you?
It sounds like they understand the comorbid, multisystemic dysfunction. I’m left with shards here.
I think if my skeleton was a bit ‘off’ outside of the scheme of things it might not be such a big deal but I can’t help but suspect that the ‘off’ issues are fragments of a more global picture.
Example: had my genetic doctor been able to (and I don’t fault him, believe me) diagnose me with POTS, then my cardiologist would have been off to a ‘running start’ as far as treating me.
Many specialists are not thinking ‘outside the box’ in my opinion and, since there’s nothing ‘textbook’ about what I’m enduring, I’m not making sense to them. Basically, there is not a bonafide reason (from their expertise, since they don’t understand EDS) why I should feel THIS BAD! But I am stuck feeling THIS BAD AND BEYOND! Every day!
Thanks for posting something that gives some hope.