How common is benign fasciculation syndrome?

[Heff]

I finished up my second EMG after four months of body wide fasiculations. The EMG, like many of the other tests, came back normal. The EMG doctor seemed fairly confident in stating benign fasciulations. I asked her how common are benign fasciulations? To which she repeatedly stated “very common”. In searching the web I have only found some generalizations for rates by doctors (such as 1/3 of all athletes have some BFS). If anyone has seen a rate of BFS diagnosis (1/1000 ?), I would be interested in knowing.

[TwitchingDuck]

Not very common at all. My Nuero said she's seen 2 cases in 25 years. She said she's more people with ALS.

[RIno468]

yikes! thats not reassuring at all!

[Yuliasir]

Pure BFS - only twitching wothout any else symptomes - is rare.
But benign twitching combined with mood disorder, thyroiditie, muscle pains and cramps is not uncommon. Some sources say that about 70 % of population twitch (especially in the calves), and I have no idea if it is regarded as BFS or not ))

Considering that doctor had seen more ALS people than BFS ones deos not mean it is more rare than ALS. It just meaqns that those 70 % twitches in their vast majority DO NOT CARE and never got to doctors.

[J4son]

Not very common at all. My Nuero said she's seen 2 cases in 25 years. She said she's more people with ALS.

You Neuro saw 2 cases of BFS in 25 year and says ALS is more frequent, while other Neuro told members on this forum that BFS is very common, and some of them said that they usually see a case of BFS or two per week. a famous Neuro told Twitchydoc that she had never seen benign twitching above the knee, while 99.99% of the 5000 members here have widespread twitching all over the body. So how do we explain all these contradictions. probably because every doctor has his own definition of what BFS is. you do not have some common criterias regarding what BFS is or is not. If someone twitch, then google his symptoms, then freaks out and run to the Neuro thinking the grim reaper is after him, well some neuros will tell him it's anxiety, others will say benign twitching, and others will say BFS. If you read the archives you will find cases where BFS was diagnosed even though the Neuro couldn't see any twitch during the examination and the EMG couldn't pick any twitch either. My Neuro told me that it was not ALS. When I mentioned BFS he said:" you can call it BFS if you wish"

Every human being on this planet will twitch during his life. At which point it is called BFS is yet to be defined by the medical literature. Without google, 90% of the members here wouldn't have gone to the doctor. People shouldn't underestimate what is called "Somatosensory Amplification" it's a medical term which according to Wikipedia means:"a tendency to perceive normal somatic and visceral sensations as being relatively intense, disturbing and noxious. It is a common feature of hypochondriasis and is commonly found with fibromyalgia, major depressive disorder, some anxiety disorders, Asperger syndrome, and alexithymia"

So most people here at some point of their lives and during high level of stress will notice a normal focal twitching that lasts a few days. They google their symptoms and then due to Somatosensory amplification starts noticing and being aware of every little muscle quivering they have and probably always had. They freak out and start the famous spiral into terror and anxiety. It explains why many members noticed a decrease of their twitching when away from internet and this board. Is this BFS or a psychiatric condition?

So BFS could be the most common condition on earth more common than common flu or a super rare disease depending on the definition we gIve it.

[mwagner]

Wow J4son, that was such a good response and I hope that everyone reads what you said. I think while we all have true symptoms, they are amplified. I saw a biofeedback specialist who did a surface EMG on me, and when I twitched, he wanted me to alert him, and while he could see it - he said most people wouldn't have even noticed what I did.

Anyway, to add to the question at hand, my neurologist, 3 years ago, said he sees someone just like me about once a month. That's 12 a year for one neuro in Denver. I think there are lots of people with BFS out there, but the anxious ones are the ones who head to the neurologist.

Mitra

[Heff]

Thank you for the replies. The consensus is somewhere between rare to very common. I will ask my neuro next week how often she sees BFS and let you know what she says.

[emmie.s]

All three of the neuros that I have been to and both of the ones that conducted my EMGs over the years have seen BFS before, so it can't be that rare. Of those that I bothered to ask, one said that he gets about one person a month who are worried about twitches. Another one said per his words "why just yesterday a young lady came in with twitches all over, and after the EMG came back normal, it was clear she had BFS" and he also quoted some Pub Med study which I never bothered to look up, so the way he put it made it sound not-uncommon, and this was from a neuro that specialized in migraines and not neuromuscular disorders, but I went to him because of my insurance. Another neuro didn't call it BFS but something along the lines of "involuntary muscle movements" and was not phased at all, kind of signifying that it was something he had seen before. So I would say its not that rare, maybe something like 1% of the population at any time gets it? The main thing to know is that its not some made-up syndrome, its real.

[Little Lost]

I was reading a study recently and although it had nothing to do with BFS it was using EMG. Needle was inserted for 90s in 3 locations per muscle for a total of 4 muscles per patient. It was the control subjects that caught my eye. Out of the 30 healthy subjects 4 had at leasr 2 non pathological fasciculations recorded in at least 2/4 muscles tested.

So this was not in BFS patients just healthy people agreeing to be part of a study as control subjects. None of them had MND or neuropathy. They were just there for the fee. Didn't even feel their twitching. Author of study dismissed the FP saying fasciculations recorded in otherwise healthy muscle are of absolutely no clinical relevance.

So 4/30 which is say about 13% of healthy controls, they were able to record fasciculations in 2 of their limbs on at least 2 occasions. Admittedly the needle was in each relaxed muscle for (3 x 90s ), 4.5 mins per muscle, which is longer than most of our own emgs, but they were still there, and theses people weren't running scared of ALS. .......though if we suddenly get 4 new members don't blame me.

Hx

PS As an aside , mitra did your fasciculations show up on needle emg as well as ultrasound. Matt was it needle EMG you had at Mayo ?
Who else had FP show up and were they needle or ultrasound ? Doesn't make much difference just wondering as we can see which method is more likely to detect them.

[bobajojo]

Needle EMG at Mayo and then when they saw the fascics, they rolled in the ultrasound. I nearly crapped myself but it didn't mean anything. All benign.

[Little Lost]

Thanks Matt,

Me also needle emg on 2 out of 3 emg tests, appeared in hand, arm, lower limbs. Single, non complex.
Hx

PS. Want to apologise for calling you a fishwife last week, bad hair day. You don't deserve that.

[mwagner]

LittleLost:

PS As an aside , mitra did your fasciculations show up on needle emg as well as ultrasound. Matt was it needle EMG you had at Mayo ?
Who else had FP show up and were they needle or ultrasound ? Doesn't make much difference just wondering as we can see which method is more likely to detect them.

The neuro only did a needle EMG... 3 years ago almost to the day. I've never been back...

Mitra

[Little Lost]

Thanks Mitra,

3 years gone, I remember reading a lot of your earlier posts at the time I used to come here ( for years) as a guest. Well done for never going back, you much stronger than me, that has now been back 3 times for EMG.

Hx

[trustme78]

I just returned from a visit to my neuro. She did a torough physical that was completely inconspicuous. Lot's of reflex tests - lots of strength tests. I got the impression she absolutely knows what she is doing. I asked her how common BFS is and she told me that she sees a couple of cases of BFS each month now since the ice bucket challenge started. People completely freak out about their twitching but twitching without any other symptoms is nothing she would worry about. She told me her eye lid twitches all the time and she had twitches in her calves as well. We didn't really look for the twitches. I got the impression she wanted to see them out of curiousity but not for some kind of clinical evaluation.

And I asked her about ALS as well: She told me that she saw about 30 cases when she worked for a specialist in this area and about two cases since she started seeing patients on her own (6 years). Both cases were referred to her and knew they had something sinister going on. The youngest case she ever saw was 42 with the average age being much older.

[RIno468]

That is great to know that neuros are seeing more cases since the ice bucket challenge.

It helps me feel less alone