Re: extreme muscle weakness
I am sorry you can't get a definite diagnosis for whatever it is you suffer from. I have LGMD 2I and was one of the "lucky" ones who could get a diagnosis through a muscle biopsy and genetic blood test. Your symptoms sound very similar to what I think most of us here have or are experiencing. I was and still am a very active person, but I was always the slowest in school etc. Right now I am at a point where I can still walk, but need help getting in and out of low chairs etc, getting up from the floor is completely out of the question! I still exercise a lot, I spend about two hours every day working out in a therapeutic pool, and most nights I ride an exercise bike for a while while watching tv. I do not fatigue and as long as I do things at my own speed I can keep going forever. This is not the case for some people with MD.
I guess what I am trying to say is that no two people with MD are the same even though we all have many common issues.
As Mandy wrote, she has chosen to not follow up with Dr's etc, I am the opposite way. I am not going to give up until someone finds a cure for this curse of a disease, if I am going down I will be going down fighting, so I try to read as much as I can about the research etc regarding my condition. I am sure my Dr's think I am a pain in the you know what. No they are all great and 100% behind me. We all deal with this differently, but we all support each other on this board.
I am not sure this is what you wanted to hear, or read ;-) If you are in the US, have you contacted your local MDA office? Have you asked your Dr for a referral to Mayo or one of the other "big" hospitals? They may be able to give you more answers.