Sorry you're here looking for answers. But, welcome. I sincerely hope that you do not have als. Anything is better....believe me. The reason I am responding on your visitor page is because I don't want to post on the thread about this. These are strictly my own opinions, and I am not a Dr. Just talking from our own experience.
Your symptoms sound similar to my wife's, and it takes quite a while to finally get a diagnosis, because they have to rule out everything else (very frustrating, I know). For your sake (and your families sake) I hope they find something else.
However, if it does turn out to be this, you are at the right place. Life is not over the day you find out. in fact, after the initial shock and grieving, your life becomes enhanced. You live more in the time you have left than most do during their 'normal' life. We're only allowed 1000 characters, I'm probably too long already.