I totally understand this. As a person who posts occasionally on this thread, I do wish to explain.
I have been told I don't have ALS by an ALS doctor, I have had a clean EMG, I started showing symptoms (only twitching at the time) when I was 25 and I am only 27. For these reasons, part of me feels I should not be on here. On the other hand, I have what has been described by doctors as "muscle wasting" in my thenar muscle and I get profound weakness after exertion. The other day (after no exertion) my pinkie finger was practically dead and I have had non stop fasciculations in both my thenar and hypothenar area. My left foot also has less muscle mass and that twitches constantly. It scrapes often when I walk, but doesn't "drop" and I haven't fallen down because of it. My muscles fatigue very easily and shake violently after moderate periods of exertion. I had radiation to the spine as a child cancer patient, and that raises my risk of developing ALS.
I am a person in limbo; I have many things that point away from ALS, but a lot of things that are suspicious and indicative of something going on. I've been twitching for 2.5 years, and the conventional wisdom behind bfs is twitching - weakness - atrophy = BFS. I have twitching + weakness + "muscle wasting" (they haven't called it atrophy yet) so I'm trying to figure out what my "=" is. My symptoms are not wholly consistent with anything I can find; myasthenia gravis, multiple sclerosis, ALS, etc.
I come to this site to humbly ask those who are close to this terrible disease: "does this sound familiar?" For example, my pinkie that went really weak the other day, the next day the strength had returned. I asked if this was consistent with ALS, and Al told me it usually doesn't work like that and it doesn't sound like ALS.
Sometimes coming to this site I feel better, like in the occasion I just cited, other times I feel worse (reading about people whose doctor also gave them a clear, the "too soon" EMGs or the super slow progressions)
I feel okay posting because there is a section entitled "Do I have ALS? Is this ALS?" I would NEVER intrude on the other threads, specifically for PALS and their family members/care takers. Honestly, I don't know who to talk to. I don't fit in on the BFS boards all the time because this seems to be more than BFS, and I worry that my posting scares the other folks there who just started twitching. I don't fit in here because I do not have an ALS diagnosis or super obvious presentation. And I don't know where else to look; auto immune boards and cancer survivor boards don't turn up much.
I truly understand your frustration regarding those who twitch and flip out they have ALS, and it must be ridiculous to see people who are generally healthy wasting their lives with empty and pointless anxiety. I never try to complain on these boards; in fact, reading some of your stories makes me complain less in general (puts economic problems and the like into perspective.)
I want to thank all of you for your patience, your kindness and your wisdom when helping those of us who just don't know. But if someone posts repeatedly about just twitching or something of that nature, I also understand your frustration. You live with ALS as part of your reality, you shouldn't have to deal with someone who is healthy but can't accept that as reality.