Oh joy, I have yet another UTI. This one we caught early though and I got on the right abx the first time. Luckily I also have a urology appointment tomorrow and I hope to talk to him either about referring me to someone who has done the botox procedure more than twice and has a better than 50% success rate that or we could get him to talk to Hopkins so when I go there I might see a urologist that has more ideas. His only other suggestion with any merit last appointment was a mitronoff procedure, where they move the appendix to make a tunnel between the bladder and the skin-usually through the belly button.
I started OT again 3 weeks ago with someone that Kevin recommended at the main campus. She is decidedly not my favorite person and I really miss Kevin, but she has seen a lot more EDS and is unafraid to make suggestions and chart things that she sees that are unusual. She says that she has never seen muscles or facia as tight as mine and in several places she can't distinguish between muscle and bone. She has never seen this much tightness with EDS but strongly believes that I have some sort of connective tissue disorder going on but has no idea what it might be. It is strange to have so much tightness in muscles and facia and be so loose in my tendons and other connective tissue. The muscles in my shoulders are so tight that they are subluxing my shoulders when I reach up and the muscles inbetween my ribs are so tight that she cannot distinguish individual ribs and my rib cage cannot expand when I breathe.
My pain doctor is pleased with how much I have been able to lower my pain meds-one good thing at least. We finally heard back from John Hopkins and the geneticist thinks that he needs to start over completely with me and that I really need a good genetic and internal medicine workup and that I will probably be able to get in with him in the next few weeks!! He is unsure if the EDS diagnosis is correct but feels that there are multiple things going on and that they really need to be addressed and soon! I hope we will hear back by the end of the week about when we will go, it is going to be hard because I will have to use my manual chair and forearm crutches to get around as wheelchair van rentals are super expensive and generally not available at the airport. I am so excited that we seem to be moving in the right direction and that there may finally be an answer at the end of this 18 year long tunnel!