I'm very new to posting on this site, actually this is my first time, but I have been reading "Threads" for about a year now just trying to maybe find a answer to all my issues. I knew deep inside there was something just a little different than what the Dr's where trying to throw at me. Finally one day I went in to see a new Neuro doc and he said he thought I had what was a rare genetic muscle Disease that he knew nothing about. So while waiting on the results of my first blood test I starting doing as much research as possible. While doing so I found most info was very vague not alot of hard evidence! But I could remember reading on this site and there were a few post that symptoms seemed so much like mine. I couldn't locate those exact post so I decided to register and tell my story so that maybe someone else won't have to suffer or even die just cause there is so little known about Pompe Disease. I have not started my treatments yet cause that alone has been a nightmare itself. There has been so many delays that I feel like Im gonna die before I finally receive the enzyme therapy that is needed on order to sustain life!! Well that is some what my story, but I have so much more to ask and say. Smile



I hope I'm doing this correct.