I could barely stand at church yesterday because of my weak legs. Anyways, I've been reading various anecdotal/personal experience posts from PALS which makes me conclude that this disease is even more ambiguous. It took 6 years for one person to get diagnosed because their EMG's and NVC was normal all the repetitive times that they have taken it. Another person is telling me that the EMG reads that you have ALS quickly and will always tell you if you have ALS. My Neuro is telling me to wait it out to see if it gets any worse. Everyone's progression rate is always different as well and it's not just contained from 3-5 years.
Although my opinion is that this disease isn't thatttt rare. Worldwide, 1 in 100,000 people get it. I could and could not have ALS, and even the doctor doesn't know. One person with ALS said she was misdiagnosed as having it and then not having it. I cannot believe they having nothing on this disease... no origin, no cure, no definite progression rate, no better diagnosis, treatment (a drug that increases your lifeline by about 2-3 months maybe). People's wheelchairs take forever to come in too.
If only there was more funding for this, there would be a cure or better treatment and options. Maybe that's why the so called "hysterical" people come on here because they know it's so ambiguous. They know that even if the doctor tells them that everything is normal, they read those personal accounts from others saying that it took them 6 years to get a diagnosis and think it might be them because their symptoms are not going away.
Right now I have an open mind, it could be various things that is causing my muscle cramps and weakness, but ALS is still an option. I do not know if there is any disease out there that is as financially neglected as this one. There probably is, but this one is up there. And the PALS that have taken the time to kindly reply to me, thank you so much for your time and words, it really changes my mindset.