Follow-up

My wife and I had our quarterly follow-up appointment (med check) on Wednesday night. We were finally able to tell him that the pediatric geneticist diagnosed her with EDS, which took him less than a minute to diagnose (10 minutes of confirmation testing to be sure). He told first asked us if that was what we thought it was when we asked for the referral (it was). He seemed pretty shocked, he kept stopping and saying things like "EDS, really?" and " I don't think I've every had a patient with EDS before". He seemed reasonably happy knowing what he's treating. He FINALLY switched her from the completely ineffective oxycodone 30mg pills to oxymorphone 10mg pills, but we're waiting for it to be ordered and the prior authorization to be approved.

He was very happy to hear that the severe stretch marks that everyone thought were from the prednisone were actually from the EDS. The prednisone wasn't good, but the EDS did most of the damage. He was also happy to hear that over a dozen of her diagnoses are linked to EDS.

There's nothing like knowing what has been destroying your body, life, and social life for over half a decade and causing medical and pain problems for all of your life.

-Steve