Benign fasciculation syndrome

[TooMuchCoffeeMan]

Oh man, I remember my bout with an ALS scare once several years ago. Also being OCD, I would get twitching ALL THE TIME especially in the legs, and then have to try to test myself by standing on the tips of my toes to see if I still could, or scare myself into thinking that I was getting ALS if I couldn't. I never got a diagnosis for my muscle twitching but several years later, I can still say that I'm twitching, albeit not as much but I have chalked it up to just BFS as well.

[Michelle1]

Just to let you know I still have the twitching, but it's been over a year and a half now and it's not progressed into anything more than bfs.

Some days are worse than others. Some days I can literally make myself twitch by just thinking about it. Best advice is to ignore them. Don't pay them any attention.

[nervousnelly52]

I have this too! I'm not anxious anymore. I am amazed, but the medication really worked for me. It's harmless, even though the pins and needles can be painful at times. I have to say the anxiety was ultimately far worse and more debilitating than any of the physical symptoms I experienced.

[melfish]

Nervousnelly, what medication are you taking?

[nervousnelly52]

Nervousnelly, what medication are you taking?

I'm taking sertraline (zoloft).

[melfish]

Thanks, that's what I suspected

[melfish]

"Equally, however, most subspecialists will recall a small number of cases, typically men in their 50s or 60s, in whom the latency from presentation with apparently benign fasciculations to weakness (and then clear MND) was several years."

This does not reassure me

[Becazican]

Mine started right below my right knee after a neurologist did ncv/emg on both sides and diagnosis me with neuropathy, emg were clean but the twitches jumped to the other leg i found als sites and down the rabbit hole i went, now twitch everywhere, i just got a second opinion at a top neurologist on the west coast and he said it is bfs but he will do a emg on me to assure me, he said i would be surprised i found als on the emg and he should know since it is his specialty. So now i wait and obsess

[Scotttt]

@melfish quit researching. You will only make things worse for yourself. I admit when I saw your post in triggered my anxiety a little.

here are two messages I received regarding twitching:

"...The passage of time. This is the toughest one because nothing you do can speed time up. But time helps because the top neuromuscular doctors in the world have the time frame of twitching to clinical weakness anywhere from weeks to 6 months, tops. If you've passed 6 months, your chances of it being ALS are the same as you being eaten by a shark the same day you won the lottery."

"Mate unless you have a number of first degree relatives with Als your chances of having Als just because of your age would be about 1 in about 250 million honestly. Also they world leading authority on Als believes that twitching is the first symptom in about 1 in every 400 cases. And then is followed by clear cut weakness within 3 months"

Yes very very very rarely there are people twitch first, but the twitches from ALS are the muscles DYING because they no longer receive nerve signals. There is no way you could have muscle death for years and not be crippled and clinically weak. If there are about 6000 cases of ALS in the US then there are about 15 CASES that start with twitching. 15 out of 320 MILLION.

Stop researching. Please. See a doctor, tell them your worries and then trust them.

[melfish]

Thanks, Scottt, and apologies for triggering you. I definitely need to stop researching!