BandersnatchF
Well-known member
Several posts over the years have discussed stories that people have gotten ALS despite clean EMGs and twitching for years. The stories are probably true, sort of, with one small hitch: most of the twitching was from BFS, with an unrelated ALS case tacked on at the end.
1.5 in 100,000 people will develop ALS this year. That applies to people who cough, people with chronic headaches, and BFS'ers. If just 1 in 1000 people in the US has BFS (this is probably a low estimate, if anything), there are 300,000 BFS sufferers in the US, 4.5 of whom will get ALS this year. This is despite the fact that BFS does not lead to ALS - as others have pointed out, BFS sufferers can develop ALS just like everyone else. When asked, those 4.5 people may say (correctly) that they'd been twitching for years before they were diagnosed with ALS, omitting the detail that they didn't actually have ALS for most of that time.
Why point this out? If you've had a clean neuro exam and clean EMG (or you've been twitching for 3-6 months with no real weakness), you don't have ALS. The Mayo study backs this up, and with only 120 participants, it's no surprise that none of them developed ALS (over 20 years, you'd expect about a 5% chance that just one case would develop in 120 people). It's not a lifetime guarantee that you'll never get it - there are no such guarantees about any disease (well, except for genetic ones, perhaps). Your chances of getting ALS in the next year are the same as they are for non-twitchers. Did you spend time worrying about it before you twitched? (OK, maybe you did
) If not, why worry about it after you've been diagnosed with a benign and unrelated condition?
1.5 in 100,000 people will develop ALS this year. That applies to people who cough, people with chronic headaches, and BFS'ers. If just 1 in 1000 people in the US has BFS (this is probably a low estimate, if anything), there are 300,000 BFS sufferers in the US, 4.5 of whom will get ALS this year. This is despite the fact that BFS does not lead to ALS - as others have pointed out, BFS sufferers can develop ALS just like everyone else. When asked, those 4.5 people may say (correctly) that they'd been twitching for years before they were diagnosed with ALS, omitting the detail that they didn't actually have ALS for most of that time.
Why point this out? If you've had a clean neuro exam and clean EMG (or you've been twitching for 3-6 months with no real weakness), you don't have ALS. The Mayo study backs this up, and with only 120 participants, it's no surprise that none of them developed ALS (over 20 years, you'd expect about a 5% chance that just one case would develop in 120 people). It's not a lifetime guarantee that you'll never get it - there are no such guarantees about any disease (well, except for genetic ones, perhaps). Your chances of getting ALS in the next year are the same as they are for non-twitchers. Did you spend time worrying about it before you twitched? (OK, maybe you did
) If not, why worry about it after you've been diagnosed with a benign and unrelated condition?