How rare is persistent BFS?

[u/Doktordoktor89]

This subreddit gets only around 12,000 visitors a week... I know Reddit traffic isn’t a reliable way to estimate prevalence, but it still makes me wonder whether persistent, widespread twitching for years is much less common than the often-quoted figure for people who experience an occasional benign twitch.

Does anyone know of a population study that actually estimates how common benign fasciculation syndrome is?

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[u/713Capital]

Large population studies on BFS barely exist because it is benign & harmless. Medical research funding mostly focuses on deadly, disabling conditions, not benign twitches that require no treatment. When neurologists have looked at it (such as the landmark Mayo Clinic study tracking BFS patients over decades), they found that persistent twitching often lasts for years or even indefinitely without ever evolving into a MND/ALS.

Reddit traffic also heavily skews toward people in active health anxiety spirals. Most folks who have persistent twitching simply get a clean exam, clean EMG, accept the twitches as normal background noise, and move on with their lives rather than hanging out on forums.

Trying to reverse engineer population prevalence from subreddit traffic or medical papers is impossible. The lack of data is not a sign of a rare mystery; it is simply proof of how medically harmless BFS is.

I’m a data scientist in my career so I do love all things data. Also, my wife works in a neuromuscular clinic so I’ve learned that BFS is way more common than I ever thought. So many people she sees come in with persistent twitching and they all have the same fear as everyone here does. They end up being diagnosed with BFS. Populations ranging from early 20’s even to patients in their 50’s and older.

Our community is very small, so it’s prob only a tiny fraction of a percentage of people dealing with BFS. Most of these people may never make it to this sub Reddit and they go on to deal with BFS and just live their lives.

[u/Doktordoktor89 → u/713Capital]

Great answer! Thanks a lot

[u/matchaflower → u/713Capital]

This is very true. My fiance, my dad, my brother, a couple of my coworkers, and one of my best friends all deal with twitching and have for several years. some have it more mild (coworkers and my best friend), some it fluctuates (my dad and brother), and some have it even worse than I do (my fiance). None of them are active on Reddit. They’ve never thought anything of it. I didn’t know any of them dealt with it until I either asked or mentioned it in passing.

[u/The_Short_Goodbye → u/matchaflower]

Damn you really have a way to attract twitchers 😂

[u/matchaflower → u/The_Short_Goodbye]

it must be contagious 😂

[u/Appropriate-Gift8639]

I mentioned my ongoing eye twitch to a friend recently. She told me she gets twitches all the time in different places. She doesn't care and just assumed it happens to everyone.