Hey everybody,In the past I know that there have been a lots of posts about scary studies. Today I would like to show that there is also reassuring studies and here they are :In this study, they searched for fasics in foot and legs of 25 healthy people. Guess what, they found fasics in 100% of them ! Some of the subjects had more than 100 fasics per minutes.On 122 healthy people tested, they founded fascics on EMG for 94 of them. Mean fasics per minute and per muscle : 8 ! Something I find also really interesting is that the number of fasics is correlated with hamilton scale, which is a tool used to measure depression, I suppose this could be the link to anxiety we all have strongly suspected.They finally conclude that : These results suggest that FPs are a very common phenomenon in the peripheral muscles of healthy persons.I am sure the study that twitchdoc is pushing on this board will be one of the most reassuring one if they have enough data. Please help us, help yourself, find 10 minutes to answer the form and even 5 more to scan your EMG if you have one (or 2 or 3...). Do it, this will be good for all of us and for all future scared members !Link to the topic :
Reassuring Studies on Fascics
- Thread starter ftheatre
- Start date
A funny thing happened a couple of day ago. My husband and I were laying in bed to go to sleep, when he grabbed my hand and put it on top of his thigh. He sat quietly and asked it I felt it. Sure enough I started to feel his thigh twitch, twitch, twitch away. I was shocked and jokingly told him that I passed on my "disease" to him. He just turned around to go to sleep and said, eh I'm stressed..good night.I guess that's how a person without anxiety deals with it, it didn't even phase him.Thanks for posting.
This is a great post and I'm amazed that more doctors don't seem to know this. I have a sneaking suspicion that many, many more people have muscle twitching than would ever be reported. That's because it's not always THAT noticeable, and the majority of people on this board, for example, have health anxiety or anxiety issues in general. So we notice it and freak out, whereas they notice it and ignore it.Thanks for posting!
paucek.sheldon1
Well-known member
This is a great post and something that i have reflected upon.Thank you for taking the time to point this out.-43RichyThe43rd
Well, unfortunately you are missing an important point - FP (fasciculation potentials) are just signs on EMG but it does not mean (and also it is not stated there) that the patients had visible fasciculations.Also sure, it is known that feet and legs are prone to fasciculations because the axons are very long. But again, even this one references the other study suggesting that fasciculations above the knee are suspicious and should be investigated - there is not a single study describing what we have.That is why I pushed the official study so hard...and still have had just several responses from community claiming "hundreds and thousands" of sufferers 
BFSburger: Where did I write anything about "worst possiblity"? Please quote me. I said "suspicious" which means it needs investigation....So please read well 
It means that the twitching above the knee should be investigated because there is likely a cause of any kind, coming to ALS is you being a bit paranoid (which I understand and cannot you blame for). And this cause might be BFS, Isaacs, nerve roots irritation, myositis, channelopathy, neuropathy... And no, pages on Internet are no medical proof of anything, especially if tons of people confuse fasciculations with twitching of muscles (like typically in MS patients).As for the study, you obviously (which is a shame, really) did not even read the post - it not done "on the forum", is this done by world top-ALS specialists who agreed to use our data as secondary data to their real patients. Not some neurologists, but famous specialist who published hundreds of articles, books and coined e.g. Al-Awaji....Sorry but how can you even try to create some theories if you miss basic infomation..As for conditions you mention to include fasciculations, again, it is just partially true and for most of them, you would not have a blood test or EMG clean...As you alone mentioned, on Herpes it is just a short-lived phase (if they are fasciculations and not twitching of muscles, which is more likely). You rely on people on forums who have no idea what is fasciculations, myokymia, myoclonic jerks...and the difference is huge because their origin is entirely different. And that is also the reason the doctors doing BFS study wanted to have a video of fasciculations for each virtual patient, because they are aware of this issue. You should be as well.I hope I did not offended you anyhow, I really do not want to. I just made clear few points you were missing.
It means that the twitching above the knee should be investigated because there is likely a cause of any kind, coming to ALS is you being a bit paranoid (which I understand and cannot you blame for). And this cause might be BFS, Isaacs, nerve roots irritation, myositis, channelopathy, neuropathy... And no, pages on Internet are no medical proof of anything, especially if tons of people confuse fasciculations with twitching of muscles (like typically in MS patients).As for the study, you obviously (which is a shame, really) did not even read the post - it not done "on the forum", is this done by world top-ALS specialists who agreed to use our data as secondary data to their real patients. Not some neurologists, but famous specialist who published hundreds of articles, books and coined e.g. Al-Awaji....Sorry but how can you even try to create some theories if you miss basic infomation..As for conditions you mention to include fasciculations, again, it is just partially true and for most of them, you would not have a blood test or EMG clean...As you alone mentioned, on Herpes it is just a short-lived phase (if they are fasciculations and not twitching of muscles, which is more likely). You rely on people on forums who have no idea what is fasciculations, myokymia, myoclonic jerks...and the difference is huge because their origin is entirely different. And that is also the reason the doctors doing BFS study wanted to have a video of fasciculations for each virtual patient, because they are aware of this issue. You should be as well.I hope I did not offended you anyhow, I really do not want to. I just made clear few points you were missing.The second study isn't restricted to the feet and calves alone, it includes the hand and concludes:"These results suggest that FPs are a very common phenomenon in the peripheral muscles of healthy persons".And, so many of us have FP on our EMGs although nothing else is wrong. My guess is if they see FPs on an EMG, the person may or may not be aware of their own twitching. Like I said, it may be "background noise" to some people, where it's "foreground noise" to anxious people like me. Honestly, if I were not so hyper aware of what my body does, I'm not always sure I'd pay attention to my twitches.Mitra
PS: That being said, TwitchyMD has a point. Get out there and participate in the study, so we can add to the myriad of "good" studies of BFS. I'm totally convinced their new results will better understand our problem. Note, I'm not participating, but that's because I never had blood work done, and really don't want to see the results of my EMG, because my health anxiety is through the roof. So, I can't with good conscience blame anyone else for not participating. But, if it is outright because you just don't feel like going through the work, think of all the good things it would do to help understand this disorder we have.Mitra
In my old days you would really scare me off with things like: The FP above the knee are really suspicious. That is exactly the attitude all my neuros had and the attitude I could think I am terribly ill because I have FP on my face, on my back, on my shoulders, hands... So I am suspicious (which was also said to me by neurologist) but until sombody could tell me what is the suspicion, I don't care. Obvously I was tested for most of the things that cause FP (excluding EMG for ALS), and there seems to be other conditions that cause this sh*t also.I can be suspicious, but as long as I can use my hands (apart from the pain), I am ok.But I see how your post could scare a lot of people here and put them down the pit. I had to read my A4 paper: "I don't have ALS" 10 times when I read your post But I am ok. I don't care what doctors think when it is obvious they don't have a clue about me. Nobody told me why I had 5 years of severe gastro problems and my colon is not normal since then. They made all the tests and conclude I have nothing. They obviously don't know what is wrong with me. And I stopped caring until I can still function to some level. I struggle day by day but that is just because I can cherish good days better...Take care
But I am ok. I don't care what doctors think when it is obvious they don't have a clue about me. Nobody told me why I had 5 years of severe gastro problems and my colon is not normal since then. They made all the tests and conclude I have nothing. They obviously don't know what is wrong with me. And I stopped caring until I can still function to some level. I struggle day by day but that is just because I can cherish good days better...Take careWow, seriously guys I know we all are very anxious people here but how can you turn two very reassuring studies which conclusion that FP could be absolutely normal and found in healthy people in something scary ?Come on, the studies here says that healthy people do have FP (and I dont see how FP going to a muscle won't make it twitch, visible or not), and that it doesn't announce anything sinister. Yes, one of the study say that above the knee they could be suspicious, but hey, until now even under the knees we would consider them suspicious otherwise we would be so anxious right ? So it's good news, that's all !Also about the study pushed by twitchydoc, you dont need your bloodwork, and you dont even need your EMG, just fill in the form and send it. There is no reason for someone to participate.And TwitchBFS, you are not lazy, you deploy fantastic energy to try to find a cure to your symptoms. This study is worth the effort, it will take about 5 minutes of your time and it could lead to :- find the cause of BFS- find a way to test if someone have BFS for sure (what a dream !)- find a way to treat/cure BFS- find what makes BFS different from ALS and maybe help to cure ALS by understand better how they are different.We are a community to help BFS sufferers, and this study is a way to help us, let's participate !
Gloria123: Thanks. Just a note to your EMG issue. I understand your point but if you were not diagnosed with anything, your EMG is good. Your doctors are obliged to tell you if they are suspecting anything. Anyway, you can participate just by filling in that questionnary without EMG or blood as they want to have as many responses as possible at least for statistical reasons. However, I am sure I do not have to explain why it is important to have as big sample as possible. Fury13: Yeah, I think that is the problem here, many of us understand "suspicious" automatically as ALS. But "suspicious" in this context means that is not part of this "normal" issue and physican should investigate further. It does not say anything about cause. Fasciculations anywhere are suspicious, that is why we go to neurologists. But it is not because of ALS, it is because of any disorder that can cause them.ftheatre: Great post, thanks. You get my points well. And I never wrote anything about "worst possibility", as you can see. It is a shame that BFSburger did not even know this is not a "study done by on a community forum", it is just a part of study with real patients done by ALS experts. It took me a lot of effort to convince them this study is worth it and then I read something like that...PS: Fasciculations potentials does not need to produce fasciculations that are felt or seen, that was my point. And from what I read there, patients did nto have fasciculations, just FPs. Which can mean that ours are just stronger presentation of the same phenomena.
Twitchydoc, I am sorry, I am not a physician so maybe I missed something but I dont see the difference between fasciculation (twitch) and fasciculation potential. For me, FP is just the electrical signal, transmited through nerves to the muscles, and it will induce a fasciculation (twitch) in the muscle receiving the discharge, no matter what. So basically, if there are FP then there are twitches, you may not see them, you may not feel them but they are there. If I am wrong please feel free to correct me, it's always good to learn