Dinner with a Twist - Twitching!

[JoshSon]

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 grapepie 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.

 

[Keiran]

@ TwitchyMD:Of course, some occasional eyelid twitching isn't the same thing as BFS. But as JoshSon 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 AboutBFS.com. 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.

 

[LostLamb]

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 mademade 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

 

[TwitchyMD]

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).

 

[DaveBRzDavesumo]

Rothaar,I was under the impression that nobody had developed als on this site. You have me worried now. The person who developed it with widespread twitching, did something show up on there clinical etc or what was the details behind this case.

 

[TwitchyMD]

Dave, Rohktaar might not have meant it this way. There were two (if I remember correctly) cases but doctors suspected ALS right from the beginning - he found slight finger weakness that guy did not know about. And he started with cramps in hands. This is not like BFSers story.Do not worry, there are exceptions to this rule but these are likely to occur in older people and still very rare.

 

[FernFinnegan]

What I'd like to know is, how many more twitchers are out there reading this forum but not registered? An example is LostLamb, lurking for more than two years with anxiety and twitches. Often, folks come out of the wood work and mention having been reading the board for a long time before coming out. I also have noticed only over 4000 posters in 12 years for a worldwide forum...gives the impression it is rare. Then, there is my friend who lives less than a mile from me who I learned has had this for 13 years, including great fear and anxiety, but did not have a neuro exam until 8 years ago. Rare or common? Who can know? My primary doc said he sees about two new twitchers per month come in with a complaint of fasciculations, but has never seen a case of ALS. My EMG tech said she sees a fair amount of twitchers, but far fewer with ALS and she recognizes ALS presentation immediately on EMG. She's not even a doctor, but the EMG behavior is unmistakable. Many people make off hand remark that their eye is twitching if they are tired or stressed, I know that is a far cry from what we go through, but still seems to be related and somewhere on this spectrum if we think of it that way.