Thank you both for the support. I will look into the Uk. My doctors here are so very nice and very apologetic to the point of not being able to help me. They indicated to me that I will probably be their only patient that has this. There are days when I just need to know that someone else is going through this too. My family are very supportive and understanding, it would just be nice to vent with someone who is going through with the same things. I tried going through the MD program but because this is part of the MD but a Non-dystrophy disease they kind of dismissed my concerns and symptoms. The Mayo has really been nice and my neurologist and his nurse help me when possible but I hate bugging them as I know how busy they are (they keep telling me that it is not a issue that I message them). I just hope that someone sees this page and will be relieved that there is someone here for them.
Thank you - And Always remember - Anyone can give up, its the easiest thing in the world to do. But to hold it together when everyone else would fall apart - That is True Strength. 🙂 Keep on Smiling
Kim