Nothing can go smoothly when it comes to unknown conditions. Especially lots of them, not just one. Conditions that are just recently starting to be studied, looked at.
Even so, things were falling into place. Apartment booked, airplane tickets purchased.
I had no direction from Dr’s. Through hours of research I would find new disorders that would be comorbid to my condition and research those. Each one adding a piece to the puzzle. I’d find out what scans I’d need, blood work, where to go. Call around till I found the place and then contact my family Dr. I’d bring him up to speed on where I was at in my research and he would write the order I needed to travel out of state to get my MRI’s, and CINE scan.
I first learned of Ehlers-Danlos Syndrome (EDS) through a local pioneer in these medical conditions. She paved a way for many. I wouldn’t want to do what she had to do, she has blessed so many who are walking in the dark here.