She was in a connective tissue clinical study through the NIH. It was great, they did lots of tests, and gave advice at the end, all for free. My daughter really enjoyed it, and the dr. involved was awesome.
We luckily live near D.C, Philly, and Baltimore, so if we ever need a good dr. for this we have them nearby.
The dr. said to just watch it now, so I don't think I need another opinion yet, because we will find and get another point of view when she gets the next MRI.
She has some heart issues as well, that we learned more about, It was great to learn about these things, so we can takes measures to keep her healthy, but I wish, too that I didn't know, if that makes sense. UGH