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Re: There are more twitchers than we realize

PostPosted: December 23rd, 2013, 7:05 pm
by leaflea
A paramedic today told me about a serious accident he saw happen and just avoided himself. He talked about his pounding heart etc... and said "and I learned something else about eye started twitching. I think that happens when I'm scared." He knew nothing about my twitching issues. Just funny how I notice these little pieces of conversation now.

Re: There are more twitchers than we realize

PostPosted: January 10th, 2014, 12:04 pm
by leaflea
Yesterday I commented on some things on one of the BFS facebook pages. In the evening, I was horrified to have a text from a friend who told me she saw them. This friend I have known about 8 years and she lives less than a mile from me. She was also a nurse in the ER where I work (another medical person story). I felt my privacy was invaded and was so embarassed that everyone could see my comment on fb, not even a post by me, just a comment. But, perhaps it is a blessing in disguise. Sometimes I feel this BFS is just a made up diagnosis and I wonder why there are only 4xxxx of us on this board over a period of 11 years from the whole world and only about 3xx on the facebook page. Heck, I have more fb friends than that and a very talented local singer has less than that and this fb page/group is accessible worldwide?? Really? I have wished to know JUST ONE REAL PERSON with this disorder (I know you are all real, but sort of cyber people and friends, I want someone I can see and touch:-). Here is her text: "Hope you are well! I saw your posts on FB about BFS. I've had this for about 13 years now. Worked up by Neuro 8 years ago or so. I started this past year taking mag 800 mcg's and 1000 calcium and it had helped temendously. I get cramps when I travel (she now is in pharma sales) but not the twitching so much. Stress, being tired, dehydrated gets the twitching in full swing but the mag and calcium help." I text back. She texts "...It (the comment) caught my eye because I have it, so don't worry (about everyone seeing it) that won't help matters. I thought forsure I had ALS, MS, you name it. It's more of an annoyance now than a worry, but I've had it for so many years. And these aren't just twitches but full muscle group fasciculations..." I text back. She texts "Ha! I just went on the (this aboutbfs site I told her about) website. I could have written that. I have every single one of those symptoms. I have never been truly dx (at least I don't think so)...I was worked up by Neuro, tried some meds, then haven't done anything about it except self medicating with magnesium and calcium because I don't think anyone will believe me or I look crazy....Lol. I have had the abdomen twitches too, but not very often. Those freak me out the most though. It does feel like a baby! Typically it's my legs-every day. I just ignore them more now than I used to. I can't ignore it when its my arms, abdomen, butt, face. Then I'm annoyed." Love this. What a gift to have a neighbor and friend who relates to this whole thing and has medical knowledge and has had this for thirteen years.

Re: There are more twitchers than we realize

PostPosted: January 10th, 2014, 1:32 pm
by veryworried123
great post

i'm hopefully hooking with a long timer in San Fran in March to share a gluten rich diet and a drink

BTW i was at the airport yesterday and the United counter lady turned to her co-worker and said "this eye twitch i have is driving me crazy. its been going on for an hour"

i though to myself lady don't even *beep* go there and your little eye twitch you have no idea what i've been through

if anyone ever coordinates a big get together anywhere let me know...first round for everyone is on me


Re: There are more twitchers than we realize

PostPosted: January 10th, 2014, 4:14 pm
by muppetdog
Yet another example. I just got back from visiting my brother in Chicago. Hes left eyelid was twitching for a day. A couple days later I showed me how hes calf was visibly twitching. He then admitted to me, that he gets in in his quads sometimes. No where near as much as I do but.......

Re: There are more twitchers than we realize

PostPosted: January 10th, 2014, 9:01 pm
by emmie.s
Really interesting stories! Especially the butt twitch, lol!
I went to a neurologist this past July (not my main one but a second opinion one when I was at the height of my anxiety) and he was like "ok you had 2 EMGs that were clean, and I know the doctors who performed them, they are neuromuscular and ALS specialists, so why are you here? Incidentally yesterday I had someone about your age complain about twitches on her stomach and legs, so we did an EMG and it was clean too, so stop worrying," and he sent me on my merry way. So yes, BFS is pretty common if he had a twitcher come in the day before I did. I bet neuros get at least one BFSer a week, but unlike us, when those folks get a benign diagnoses, they believe it and they don't go home to join this forum because they don't have health anxiety as we do.
Yesterday I went to grab a (gluten free, LOL) drink with a friend, and she was complaining about a twitch on her cheek that she's had for two days due to work stress. I just smiled and said "yes, those suck don't they!" Yep, so many benign twitchers in the world!

Re: There are more twitchers than we realize

PostPosted: January 10th, 2014, 9:24 pm
by veryworried123
I think trees a difference between hey I twitch a little bit and us who twitch non stop and it warrants a dr visit

I don't know how many people fall into that category but a senior member said it was about 2% of the overall population

Re: There are more twitchers than we realize

PostPosted: January 11th, 2014, 6:35 am
by J4son
I think muscles twitching are extremely common, what is less common is when the condition interfere with daily life due to the symptoms itself or the anxiety of a more serious condition. From the moment I started noticing twitching two and a half months ago, I discovered that the two persons to whom I mentioned my problem were twitching also. First a coworker, who in the beginning told me that he, had never twitched, but a couple of weeks later he came to confess that the night before while working at home on his computer his thigh twitched nonstop for 2 hours. Same with my girlfriend, whom now became extremely aware of her twitches, and told me yesterday that she is feeling a lot of random sporadic twitches that jumps from her arms to legs then elbow then thigh etc.

So random twitches are common, but the big question is when do normal twitches become BFS? The condition is still poorly defined and seems everybody label themselves as BFS sufferer while they can just be normal twitchers with abnormal hypochondria.

If we take Fibromyalgia for example (that some people link to BFS), people diagnosed with fibromyalgia goes to the doc because they are in pain not because they are anxious. Same with chronic fatigue syndrome, where people seek medical help for extreme fatigue not anxiety. In BFS it seems to be different, since most (not all of course) people go to the doc not because they are bothered by the twitches to the point of not functioning normally in daily life, but because they are anxious to death after googeling their symptoms. ALS patients go to the doc because they feel weak, Fibromyalgia people because they are in pain; CFS because of fatigue, BFS patients because of extreme anxiety. Peopkle with BFS will not go to the doc and ask for a way to stop the twitches, the pain or the fatigue, they will go to a doc after another just to hear ad nauseam that they don't have ALS.

Personally I would have never visited a doc if I did not google about twitching first. So I truly believe that muscles twitching are extremely common, even my neuro said he twitches frequently. So now it’s been more than two months that my life is completely on hold due to extreme anxiety triggered by one and only one thing: stupidly typing “muscle twitching” on an Internet search engine.

Re: There are more twitchers than we realize

PostPosted: January 27th, 2014, 5:54 am
by Rothhaar
"Are there more twitchers than we realize?"

Definitely yes and there are obviously even more twitchers who don't realize themselves that they are twitching. Count me in as well! I just talked to a former colleague with whom I had worked together for some years from 2002 on.

I told him about my twitching and the anxiety coming with them. Guess what he answered: "Oh, but your eyelids have always been twitching like crazy when you were stressed. I always thought you were aware of that."
The strange thing is that I really wasn't. Maybe it was so normal for me that I never realized it ...

Re: There are more twitchers than we realize

PostPosted: January 27th, 2014, 6:11 am
by TwitchyDoc
Well, you are confusing people who twitch occassionally, which is pretty common, and us, who twitch nearly non stop in all extremities, sometimes bulbar muscles, which is BFS.

While the former is really common (eye twitches, thumb twitches or calf twitching), the latter is quite rare and - as confirmed by a few ALS specs (including prof.Carvalho and Eisen) - this is the reason why no formal study except for the old Mayo (where only like 1/4 had widespread fasciculations) has been performed. Dr. Swash (London MND specialists) said that he had seen like 10 people in his whole career with widespread benign fasciculations.

As someone in this thread mentioned, our twitching affects our lives which is nothing people who occassionally twitch can say. If I roll in my bed, my back, abdomen and thighs starts twitching - this is nothing like stress-related eye twitches ;)

So we are quite unique. In the years of existence, this board has not had that many participants if you realize we are from all around the world and many people have had only calves twitching.

If I remember correctly, Al Awaji document stated that "widespread and frequent fasciculations are very rare" - and I belive so. I wish I could meet anyone here like me :)

Re: There are more twitchers than we realize

PostPosted: January 27th, 2014, 6:25 am
by DaveCH
I have wondered when you hear everyone twitches what is actually normal. I know people on here twitch 24/7. I would have maybe 10-15 a day which are like pops and can occur anywhere which to people who twitch 24/7 probably seems normal but I didn't use to twitch so it's not normal for me.

Re: There are more twitchers than we realize

PostPosted: January 27th, 2014, 7:04 am
by J4son
Interesting twitchydoc, but where is the border between what is normal and what is not? After how many twitching per day it ceases to become normal twitching? Ok a hotspot that lasts for weeks or months, that can be clearly visible by a neuro all the time and easily caught on EMG might not be very frequent, but what about the other random daily twitches that pop ups like bubbles all over the body from time to time during the day?

How come many people here starts noticing widespread twitching after reading about it on internet or other medical sources? It’s exactly what happened to me after a hotspot that lasted a few hours and never came back. I started looking for stuff on internet, and was happy it was not widespread. Well a couple of hours later it became widespread. So what’s the role of anxiety in all that? Maybe everybody here had always widespread twitching but did not noticed them before reading scary stories on internet and became over aware of body sensations.

I think BFS should be better defined in medical literature otherwise we will still hear neuros saying its rare and other saying it’s very frequent. BFS is still not even recognized in many countries.

Maybe after all the majority of people here do not suffer from BFS but rather from a form of health anxiety disorders.

Re: There are more twitchers than we realize

PostPosted: January 27th, 2014, 6:53 pm
by Rothhaar
@ TwitchyDoc:

Of course, some occasional eyelid twitching isn't the same thing as BFS.
But as J4son already said, there must be some connection or a kind of "continuum". I don't think that it is just by chance that I had eyelid and eardrum twitching for a couple of years and then developed BFS. Especially since (at least my ) BFS-twitching is just as stress (and anxiety)-related as my eyelid twitching seems to have been.

As for the incidence of BFS, do you really think it's such an extremely rare thing? If this were right, it would be very worrisome. If an MND specialist like Dr. Swash has only seen ten cases of benign widespread twitching during his whole career, then the chances that widespread twitching is something sinister rather than something benign would be rather high. This, however, would contradict everything I have read so far on the forums.

For example I have read somewhere that a neurologist told one the guys here that he sees about two cases of BFS each month (!). How can this neurologist see two cases each month and an MND expert only ten cases during his whole lifetime? This just doesn't go together.
Furthermore we have about 4000 people here on the forums and from what I have read so far my impression was rather that most of them had widespread twitching instead of focal twitching. And among all these people there has only been one confirmed case of that terrible disease everybody fears.
I do agree that we have people form all over the world here on the forums and that 4000 may not seem much against this background. However, not everybody in the world with BFS becomes a member of So there are probably a lot, lot more cases of BFS.

As for the Mayo clinic study: are you really sure that only 1/4 had twitching in the sense most of us here experience it (i.e. widespread and persistent)? Can anybody confirm this? This would unfortunately shed a new and discomforting light on this study, but I hope it's not the case.

Sorry to go so much into details, but your assumption that BFS is a very, very rare thing really worried me quite a bit.

Re: There are more twitchers than we realize

PostPosted: January 27th, 2014, 9:03 pm
by Little Lost
Twitchy Doc,

I fasciculate all over and I have them caught on 3 EMGs. On 2 of them most of my upper and lower limbs, though not paraspinals, recorded FP. Uncomplex simple FP nothing else.. The third EMG saw no fasciculations, felt good but then I asked him to choose any muscle and this time asked him to keep the needle there for at least 2 mins, sure enough 90s later pop goes the first FP, So 3 EMGs and 3 neurophysiologists( all apart from each other, all experienced in MND diagnosis), all saying it means nothing to have widespread FP. All saying they see it all the time ON emg. I personally find this hard to believe or why would FP carry weight in the diagnostic criteria if EVERYONE FASCICULATED. It is one of the defining signs (abet with company of other abnormalities). Why would FP even count if they were such a common occurrence on EMG.

I feel like a freak, I am over 2 years into this. I pop all the time- and I feel even on this forum a bit of an outsider, and cant get the same comfort from others. because most people come back from EMG not even one FP ( or the odd one in the calf).. So I twitch constantly, and buzz and I have proof of that. I like you have read all the papers disected them, but I am becoming biased in my research focusing on those studies that mention negative aspects of fasciculations and pulling any reasuring paper to bits.

If I am honest Prof C last paper that I talked about in the emails also has holes in my eyes. His controls were too clean (37 individuals, 5 sticks into each TA, and 2 mins duration each stick and not one FP showed up in any of the control TA muscles Thats over 180 needles inserted, 360mins of recording. I have never had clean controls like that in any biological system I have always had outliers. (unless we are being lied to and FP aren.t common at all on EMG). Too clean. Also what happened to the other half of the ALS patients that didn.t yet have FP in their healthy TA muscles, why were they not followed to see if FP were the actual first abnormality they went on to develop. He was trying to show FP as an early change, so here he had a group of ALS patients with nornal TA muscle, he wanted to see what sequence abnormalities showed up in. Why not choose these zero patients to follow. If they developed FP first it would have added weight to those other studies done in ALS with TA FPs already. Perhaps I am being critical, and time constraints stopped this, but it would have made
made a more complete picture,

Anyway I am tallking too much, just wanted to say I twitch, I twitch widespread, I twitch in my throat etc, and I have proof of that, and I also can only find conflictimg data on how common this is.

Helen x

Re: There are more twitchers than we realize

PostPosted: January 28th, 2014, 2:46 am
by J4son
Rothhaar wrote:
As for the incidence of BFS, do you really think it's such an extremely rare thing? If this were right, it would be very worrisome. If an MND specialist like Dr. Swash has only seen ten cases of benign widespread twitching during his whole career, then the chances that widespread twitching is something sinister rather than something benign would be rather high. This, however, would contradict everything I have read so far on the forums.

It all depends on how you define BFS. Until now no true definition exists. BFS seems today to be given to any person who seeks medical attention for benign fasciculation, without distinguishing between those who seek medical care because their twitching are disturbing enough to clearly interfere with their daily lives and those who seek medical care because of internet anxiety. Both will be told they have benign fasciculation, both will end up here, label themselves BFS and starts a hide and seek toxic game with MND’s scary stories.

Yesterday I was surfing a Post-traumatic Stress Disorder forum (PTSD) and many people there were complaining about twitching, yet they linked that to anxiety and stress rather than MND.

I would be also interested to know if doctors have witnessed a rise of fasciculation concerns among their patients after the beginning of the internet era. It would explain what I’ve already read about benign fasciculation being more frequent among medical students’ decades ago.

The Netherland’s study in the eighties showing that 50% of men and 61% of women among the general population twitches is a proof that twitching is extremely common. Now the proportion of BFS among these people is difficult to say in the complete absence of a true definition and criteria of what BFS is. Depending on the definition, on the available medical resources (in the eighties internet did not exist), on how many people went to the doctor for their twitching, BFS could be close to 0% or as high as 50% of the population.

Re: There are more twitchers than we realize

PostPosted: January 28th, 2014, 3:04 am
by TwitchyDoc
Little lost: You misunderstood a bit the purpose of the study you talked about, it was aimed at electrophysiological changes in ALS patients (study OBJECTIVE: We studied the earliest abnormalities in MU physiology in ALS and changes over time.)- those who already have the disease and how fasciculations are first abnormality in yet unaffected muscles. The controls with BFS were to compare the recordings of fasciculation potentials. So not really relevant for us. Anyway I did not get your question related to what happended to the other half of ALS patients - they proved that fasciculations precede any other changes (as in conclusion), isn't it what you are asking about? Anyway, I do not think this is the place to discuss things like that. If you are intereted in neurophysiology, lets continue via PM.

Rokhtaar: you can read the Mayo study yourself if you do not believe me, I think it was even less than 1/4 who twitched widespread.

As for some neuros saying seeing two cases of BFS and specialists saying it is very rare - this is quite simple, geneal neurologists often see people who twitch in their calves and feet, which is extremely common and it is a form of BFS.
"Benign fasciculations are common among medical students" - sure, benign fasciculations, meaning occassional twitching of eyelids or thumb muscles as described by Denny-Brown decades ago. But we have much more than than.
In dr.Eisen's book (ALS: Synthesis of research) he defines benign fasciculations as non persistent, often disappearing for months and returning, occassional. So what we have is something else.

I definitely do not agree with Rokhtaar that just because it is rare it is worrisome. I think the opposite -t because it is rare, there is not enough data (whcih a few studies mentioned, that BFS is ill-defined condition).