I saw my urologist at Childrens last Thursday and as a result we decided to stick with him until I have to transfer out of the system. He thinks that all the test the other guy wanted to do are unnecessary because they won't change what we are doing now and will likely just cause more problems. Because of my increased UTI's he wants me cathing twice a day which sucks, but eventually might get me off detrol and valium.
We got the letter Dr. Elias sent to my PCP and she said that my hip is healed and that I have keiloid scars and that the scars on my arms (which are definately the typical cigarette paper scars of EDS) look like psoriasis. Plus she said that I most likely have a very mild case of EDS, yeah right! Clearly she hasn't read my PT or OT notes or remembered my physical exams. I score a 8 on the beighton scale and I have sores that haven't healed yet after years! I see another specialist in that clinic today that specializes in transfering kids out of the Children's system so we will see what she has to say about that. I may end up going to Baltimore to see Dr. Francomono after all since no one here really knows what to do.