Thanks for your thoughts, Dagmar. I am so frustrated right now though. I sent an email yesterday to the dr who did the emg back in October. I was quite surprised when he called me back and we spoke for 20mins. He's a very nice dr and he said he was surprised by the findings. He said it's very unusual for someone to get this type of diagnosis later in life. The NW dr said that I have probably had this for 10-12 years already but the symptoms took time to show up. What was interesting from the emg dr was that he asked me if the NW dr ever said anything to me about his report indicating there was some sensory nerve issues. Told him no. Here the NW dr was commenting on how the original biopsy report was not completely evaluated and it did have comments at the end of the report that there could be something else going on. So maybe the NW dr did not read the whole report from the emg dr. The emg dr feels strongly that I should go to Washington U in St. Louis as they have a neuromuscular center. He feels at NW there are only 2 drs who specialize in my type of issue and they have no one else to bounce things off. At Washington U there are a # of drs who work on a pateient's issues. I have a name though from the emg dr - I am considered an outlier, someone out of the norm. So in the 8 years of treatment I have been told PM, then possibly going into IBM, then being told my PM was still very active and it wasn't IBM and then by the same dr, after getting the slides, saying stop all meds and I have LGMD. My daughter jokingly said if we go to St. Louis maybe I'll end up w/3 different diagnoses! I'm still on overload and hope this weekend I'll be able to sort things out.
|