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I've been completely obsessed with this topic for a while now, done endless research, and spoken with 3 neuromuscular specialists. None of this makes my info any more reliable (and in another thread I posted to I was completely disregarded :-D ), but just for sheets and gaggles I'll throw in my 2 cents.
Many many people have BFS and this includes lots of PALS, which makes things pretty murky sometimes when you hear people describe their symptoms.
If you have all of the following:
1) sudden onset of widespread twitching
2) twitching that comes and goes
3) a clean emg
4) no clinical weakness
then you have BFS.
That's not to say that if you have a persistent twitch in one area and weakness that you can't still have BFS. BFS commonly causes "hot spots" that twitch from days to years. It's also known to cause cramping, weakness and fatigue. If you have a hotspot and sensations of weakness but have had a good neuromuscular specialist perform an EMG on you and tell you that you are clean then, as tough as it is, you need to try to move on. Often times, that is nearly impossible for BFS sufferers, and they need to see a specialist about their ALS obsession and anxiety.
Some might want to go to the aboutbfs.com website and read the experiences of the people there. You might find some comfort.
I would also like to add that while BFS doesn't turn into ALS, BFS sufferers are no more immune to ALS than anyone. That means that some people (very few) will have BFS for a while and then get ALS. No one knows how many people have BFS because it's believed that most sufferers never notice/report their symptoms (they just haven't googled it yet :-D ), and BFS has an emotional side to it that makes the twitches worse once they are noticed. Estimates have been as high as 30% to 70% of the population experiencing episodes of BFS. Those numbers seem a bit high to me, but if you use the 30% number then 90 million americans could be suffering from BFS right now. All of the neuromuscular specialists I saw say that they see more and more BFS all the time. One of them told me that he used to only see other physicians with BFS because they were the only ones who got worried when they started twitching. He still sees a lot of physicians every year, but the general public if definitely catching ALS-mania.
As for me, I certainly don't know if any of the stressed out posters here have ALS. I pray that they are all clean. But more than that, I hope that if they are clean, that they will be able to come to grips with the emotional side of all of this.
If anyone needs any help with anything, feel free to PM me.