Just a note that the "criteria" are more than symptom-based, Kevin -- they include an EMG and appropriate ruleouts from labs and imaging, not just a laundry list of issues. No neurologist has to "wait" past twitching and cramps to make a diagnosis. There's no strategy like that. You can't even code "possible ALS" on a discharge sheet.
If they don't have enough evidence to consider ALS, then they don't. When they do, they do. And then they diagnose it or not.
So if I have one piece of advice for anyone who's worried about ALS, it's this: don't read symptom lists from anyone, here or elsewhere on Google. If you're worried, get checked out, because the odds are, you have something treatable or nothing at all. And you are not in a position to figure out the difference from lists, anecdotes, or YouTube videos.
Twitching and cramps are ridiculously common features of the healthy, so from a search standpoint and emotional distress, it would hardly be wise to connect them any further with a fatal disease. People who need to rule it out will ultimately have way more wrong.
Aaron, the current consensus is that riluzole works best when given early. I think you may be reading some older research that had a lot of technical limitations (like way less computerization than now). But just as in any serious disease, P/CALS' quality of life is generally improved when possible relocation, finances, legal documents, work, family, friends, and other logistics are addressed as early as possible, in time to leave room for stuff like adapting to the disease.
There is also no biochemical justification for delaying diagnosis -- no treatment works better later in the course of the disease. In fact, delaying or ignoring a diagnosis or abnormal clinical findings may leave one open to later health/life/disability/long-term care insurance reimbursement denial if the payor can demonstrate you had issues/visits/advice that you didn't acknowledge on documents.
But, neither, in most people, is there any longer some huge delay, presuming they have access to modern health care (as even a Medicaid-funded visit would provide, given clinical findings of concern) and are actually committed to the diagnostic process (some people delay, go into denial, doctor-shop, fall into quackery, etc). So the notion you have to snap your head up at the first twitch is just very wrong and causes a lot of unnecessary distress via search.
What we do see here, more often, is people with normal findings or minor abnormalities or some other health issue, whose subjective belief or overwhelming fear is that they have ALS. They can leave the false impression that the diagnostic process is necessarily torturous, or unusually prolonged in their case, and thus that ALS is very difficult to diagnose.
Health anxiety and obsession with a given condition are serious issues that can be lifelong if not treated. That's why we don't validate or enable them here. Unfortunately, ongoing sufferers ultimately build their own prisons and wreck their own lives, which can be really frustrating for those whose lives are actually changed forever by an incurable disease.
Sorry to be blunt, but if there's anything that most P/CALS know, the reality that they share, is that life is too, too short to be spent in delusion.