The local docs started mentioning ALS right away, and referred me to the ALS clinic. Myself, I didn't think back then (June and July of 06) that I was very sick since I do not have a lot of pain. I use to believe that a person who has something this serious probably has pain, but after visiting this site I know better.
The ALS clinic is reluctant to say just yet that it might be ALS. Back in August they assured me I had MS, but those tests came back negative for that disease. Before getting the referral to the clinic, I had an incident that sent me to the local hospital, where they tested for all the regular and odd-ball neurological stuff. Seems I do not have any number of diseases or conditions, but the ALS clinic said in November that we need to wait and see if things got worse.
I am picking up new symptoms every month, but decided to wait until my next visit on 2/5 before addressing them. I have learned from this site to remain calm and let nature take its course. I figure I have the rest of my life to deal with ALS, and from the folks here I know that can mean I will deal with it for a few months or perhaps a few years. I am just enjoying today as much as I can.
I read about the 4 stages of DX for this disease and I figure in June they had me at "Suspicion" of ALS. Now I expect to be told that it is "probable ALS," but I am just guessing that you need to be a lot further down on the FRS (Functional Rating Scale) than I am. I'm still at about 80% capacity and have only had to revise my life-style a little, like moving my bedroom to the first floor.
If you want some links to where some of this information exists let me know! Hope this actually helped rather than left you more confused.
Regards, Cindy