MightyMouse Posted October 3, 2007 Report Share Posted October 3, 2007 hi everyone...I got the call today from the genetic counselor: my genes don't show the suspected error they were looking for, which apparently is present in better than 90% of those who they test who also are short like me. The geneticist and I both don't quite know what to do next --we both think I have some type of genetic syndrome, but not sure which it is. I did tell her I didn't want to come back to see the doc I'd seen in June b/c of the fact that I didn't think it was professional of him to flippantly state he's taking away the EDS diagnosis, but then fail to tell me what he thought I had, and leave the room, all in less than 3 minutes of a 3 hour long appointment (3 others, including the counselor, took care of me for the other 2 hours and 57 minutes ). I told her he'd really ticked me off; and she said she noticed that at the appointment but couldn't fix it. I did tell her I appreciated that and I was pleased with how she and the other two did their jobs, but that the head doc blew the whole thing by being such an idiot... I know she can't fix it. She said she'd talk to the other doc there, and also would keep my file in case she comes across something that "sounds like" me.I also requested a referral to a pain management doc that might be able to help me--the drugs I've been given haven't helped; oxycontin makes me too hyper to sleep (if I can't sleep, life isn't possible for me). I was back at PT for a while (6 weeks this summer) and it actually made things worse with my neck and shoulder and I've not recouped. I don't want to go back to my current pain doc b/c his last suggestion when I told him what happened with the oxy, was to give me morphine. There have to be other options... I'm a bit bummed to not have an answer that pulls the whole picture together, but feel at least okay knowing that my overall treatment plan, for now, is pretty much stable.Nina Quote Link to comment Share on other sites More sharing options...
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