Experiencing Anxiety: Common But Misunderstood

Highlights Only
Jerry2: Exactly my thoughts and experience. BFS is definitely pretty rare, at least the widespread presentation.Mario: I agree with Matt - most of people here do have fasciculations, otherwise they would not be scared. Simple rule - if whole muscle is twitching, it is not fasciculation. If only one bundle is twitching, it is fasciculation.BTW having or not having fasciculation potentials on the EMG is nothing - if you place the needle 5 cm away, you will not record the fasciculation. If you see flickering in your muscle (e.g.) and it does not cause movement of that limb, its fasciculation. The only exception is in small hand muscles, where fasciculation can cause small jerking of fingers.
 
Jerry2 and twichydoc: I totally agree with you. And when I read your definition on fasciculations TwichyDoc, there is no doubt that I have that. I have my fasciculations on tape and the doctors who have seen it says it's absolutely fasciculations. I get so angry when I read how hard it is to get this recorded on EMG. I was not believed in having fasciculations because of clean EMG, but I felt them other places then the measuring was, and it only lasted for a few minutes. And the neuro who did the test, have even refused to see my video! I'm going to be tested for SFN, even if the doctors now agree that MS is a much more likely diagnosis. I have always thought I can not have SFN since I have fasciculations all the time, so it was a new thing for me to read that it can happen at the same time.Another thing: remember that most neuros have heard of very rare neurological deceases, and I still haven't met anyone who have heard of BFS or recognize my picture or have any advices at all. Those of you that write that BFS is common, you seem to write about some fasciculations can be common, not the whole BFS-picture..but it's ok that we do not agree on everything..And I'm also sure we do not all have the same thing!
 
All things considered, BFS seems far from rare. TD kept using the term "Severe" cases of BFS and I think this discussion is all over the place and not on the same playing field. Is the twitchiest person on earth a rare specimen? YES, he/she is the ONLY one to be the twitchiest (and yes I"m using twitchiest to include true fasciculations). Based on the first hand feeback from neuros that have reported seeing "People like us all the time" and accounts from members who know family or friends with similar symptoms it paints a pretty clear picture that this stuff isn't rare. Beyond that I am certain there are gobs of BFSers that never get diagnosed or make it to a neuro as many others pointed out. By contrast, virtually EVERY victim of ALS or other deadly diseases get diagnosed and require major support. The argument that lack of studies and literature on BFS supports the notion that its rare doesn't hold water IMO. It makes much more sense to me that the medical community just doesn't give a rats a$$ about it...and neither do I. As far as I'm concerned, all available funds and effort should go toward curing fatal diseases like ALS. In the end, rare or common, it makes no difference. BFS is benign and can never kill us. That's all that really matters to me.
 
How do I know they were scared? Well, I don't know. I know my friends were scared when I told them, they told me: Wow, go to a doctor, sounds serious. The hyphnotherapeut was obviously scared if he refused to take me. One psychiatrist also refused to take me because I had so many body symptoms. The chinese medicine doctor adviced me to go to western doctor because I had to much bad symptoms to be treated by Chinese medicine. He can relieve the symptoms but not cure me, he told me.And since I had severe colon problems for 5 years before that I know I got very different responses from the friends and doctors. Now nobody dares to say it is all anxiety (except my wife) ;-(I think it is rare because if it were not, I would be able to read in our forums something about it. I can read about stomach problems every day, about headaches every day, I have hard time finding someone who twitches all the time, let alone has some other problems. I know one programer who had ulnar symptoms but he had Cubital tunnel and was operated for it. I know as I told a lady who had simmilar symptoms but milder and she has MS (improved this last years greatly).If one falls into pit thinking about everybody has BFS, look how many people are here is ok. But one can fall in the same pit going to ALS and even more to MS forums and he can be quite fast convinced MS and ALS are common diseases.
 
This site was set up to support people, not for a bunch of idiots to discuss what BFS isn't. BFS can be anything the S= Syndrome, Syndrome = anything. Twitchydoc seems to be able to convince everyone he has als, and has been doing so since the last time Jesus walked the earth, yet for all his crack pot theories, and his certainty that he has atrophy / weakness etc he's still here spout thing same *beep* over and over again. so Anxiety does not cause BFS? what makes you lost so qualified to make this conclusion, hell even the top neurologists arent qualified to make this determination. I'm sick of people coming into the chat room saying 'i just read this...is it true that anxiety cant cause BFS, if so I must have ALS" bfs can present in a lot of ways, but guess what, if you dont have weakness, its nothing. if you have a clean clinical 100% is nothing more serious.As to how rare bfs is, which i see was also discussed on this thread, who cares. Statistics are for scientists and insurance companies, just because something is 10000000000000000 million to 1 does not mean you cannot get it. if BFS was the rarest syndrome in the world and its benign, who gives a crap. there are two many variables to calculate, how many people actualyl get worried by their twitching, how many go to a doctor, how many dr's record a dx of bfs vs. anxiety vs. meds v. other neurological syndromes. at the end of the day, it doesnt matter.A wise Jet once told me, ALS only presents in a certain way. Weakness, twitching, atrophy. there is no pain, no sensory issues, no feeling involved. the fact that in 4000 members on here there have been No confirmed als cases, proves he is right.
 
To say that anxiety cannot cause BFS is ridiculous in my opinion. I don't care what neurologist says so. Anyone who says such a thing has never lived with chronic, unrelenting anxiety disorder for months and years on end. I am 34...was diagnosed with GAD when I was 14. I've had panic attacks and health related anxiety since I was 8. For 26 years I have lived in fight or flight mode. I'm not sure even the wisest neurologist could explain exactly what a lifetime of anxiety does to the human body. I know that not every person on these boards has had an experience like mine. There are quite a few with stories like mine though. There are even more who started out with simple twitching and/or sensory symptoms who didn't think much of it until curiosity got the best of them and they consulted Guru Google and anywhere from overnight to a few days later were twitching/buzzing/going numb more intensely and from head to toe. Many of us experience relief to varying degrees once we realize this is benign and not the end of our lives. I realize not everyone has the same story...but to make a blanket statement that it CANNOT be anxiety is ridiculous. Worrying will not make this better. I would give anything to get back the time I wasted making myself sick over BFS. Thank goodness it was six months and not years. Frances
 
Johnny, Bill, Frances, Nervous guy, basically all you old timers are right. This thread is ridiculous as is this argument. There's no way to track how many people have twitches. That's like tracking how many people have stomach aches. Not everybody with stomach aches goes to the doctor and not everyone with stomach aches complain/freak out. And Frances i could not agree with you more that anxiety plays a huge role in this. I know, at least for me and many others on this board, we were anxious before consciously and upon reading on the internet, we had a bit of a freak out to say the least. Another thing i believe is that we all have quite a bit of anxiety to some extent, but for some they may not know it because it's at a subconscious level.
 
One thing I have noticed on this forum is that everyone seems to focus on anxiety but not always on other forms of stress. I believe that anxiety really is just another form of stress. If someone is anxious that they have some horrible disease it creates a stress reaction in their mind and body. I have seen several posts from people who wrote that they did not have health anxiety when they got this disorder. However, if someone had alot of stress in there lives from other sources than I think you could provoke the same reaction. I bring this point up for two reasons. The first is that while many people on this site report that they did not have health anxiety prior to BFS that does not mean that they were leading highly stressed lives. I seem to recall several posts where people talked about lack of sleep, working crazy hours or tragic events being a precursor to the start of their symptoms. I think my own symptoms resulted from a negative reaction to medicine, health anxiety caused by that reaction, but also high amounts of stress at work and a lack of enough sleep at night. The second point is that there are an incredible number of disorders that at least have some root in having high stress levels. Whether it be hypertension, acid reflux, autoimmune disorders, etc, there is often a close relationship with stress/ anxiety. Even people who deal with disorders like Parkinson's/ MS find that controlling their stress levels is critical to dealing with their condition. In other words, leading a highly stressful life has a tremendous impact on our health and can lead to all kinds of crazy syndromes and problems. To put it another way be thankful that our condition will not permanently disable or kill us. Finally, I think I have read a zillion (not an exaggeration) different treatment strategies on this forum (us BFSer's are anything if not creative), but the most consistantly mentioned treatment that leads to at least some results seems to be to reduce our anxiety and stress. It does not happen over night, but with patience and a fundamental change in how we live we can at least learn to control our BFS symptoms.
 
CautiousExplorer: myokymia is not a part of BFS, its different entity. Show me evidence, I have never had a myokymia, which is wave-like undulating movement, not twitching. Neuromyotonia has certain and clear EMG picture, no one has ever reported here such a findings on their EMG. GeoffWab: The thing is, I do have atrophy there, confirmed but not getting worse. And it was not explained by original idea the doctor had. I have never said I had ALS, yet I am still fearful. My theories, as you call it, are based on actual cases, publications and studies.Calling people idiots just because they are discussing something which you did not like is really pathetic. And BTW, read the Mayo study and the consequent note of its authors (their answer to 6,7% study)..it is not that nice as you think and they did admit (the authors of original Mayo study) what you say its not possible.If you do not like the discussion here or have nothing to add except for calling people names or making statements you cannot prove, just dont read this topic.
 
Docen,I'm not sure what you are referring to about the Mayo study. Can you clarify? Do you mean that in the study, all 121 patients has a clean clinical exam as well as a clean EMG (with the exception of fasciculations)? I'd like to remind everyone of the very last line of that study:"The important conclusion is that if the physical examination is normal and the EMG studies are normal or do not suggest motor neuron disease, the patient can be reassured of a completely benign prognosis. "-Matt
 
Fasciculation potentials in healthy people.Mitsikostas DD, Karandreas N, Coutsopetras P, Piperos P, Lygidakis C, Papageorgiou C.SourceAthens University, School of Medicine, Department of Neurology, Aeginition Hospital, Greece.AbstractThe aim of this study was to investigate the fasciculation potentials (FPs) in the small-peripheral muscles of the foot and hand and the possible associated factors, in a healthy population. One hundred-twenty-two normal !!!!!! (not originally diagnosed BFS persons!!!)individuals (65 men and 57 women), aged 17-67 years (mean 39.96, SD=12.76) participated in the study. A special questionnaire consisting of 47 questions was devised as the basic instrument of the interview, which included the Hamilton anxiety rating scale. The extensor digitorum brevis (EDB), the flexor hallucis brevis (FHB) foot muscles and the first dorsal interosseous (FDI) hand muscle muscles were studied bilaterally using surface electrodes. In 94 (58 men and 36 women) from 122 participants (65 men and 57 women) FPs were recorded (men 89.2%, women 63.1%, all 77%). The mean FPs per minute and muscle, in all three muscles, was 8.0 (SD=4.6). More FPs were recorded in the muscles of foot than in FDI (p<0.01) and in FHB than in EDB (p<0.001). FPs were correlated to gender, body height and weight and to the score of the Hamilton scale (r2>0.1, p<0.01). The syndrome of benign FPs was observed in 2 men (1.6% of men). These results suggest that FPs are a very common phenomenon in the peripheral muscles of healthy persons.Point one: normal people twitchpoint two: they do it in ther feet and hands which makes it widespreadpoint three: the number of fasciculations is correlated to the anxiety levelPoint 4: 1,6% of men suffer from benign facsiculation syndrome.....that is almost 2 in 100 People compared to 2 in 100.000 in ALS ...I might err but....doesn't that say that BFS is a thousand times more common than ALS??
 
And one more for the arch twitch community: Fasciculation potentials in foot and leg muscles of healthy young adults.Van der Heijden A, Spaans F, Reulen J.SourceDepartment of Clinical Neurophysiology, University Hospital, University of Limburg, Maastricht, The Netherlands.AbstractThe occurrence of fasciculation potentials (FPs) was studied in healthy subjects aged 18-25. In 25 males and 25 females 3 intrinsic foot muscles, the tibialis anterior and the gastrocnemius muscles on both sides were monitored with surface electrodes for 2 min periods. Only potentials with a peak-to-peak amplitude of at least 50 microV were counted. The number of FPs per minute (FPs/min) was significantly higher in the abductor hallucis (AH) and significantly lower in the tibialis anterior as compared to all other muscles (P < 0.001). Men had significantly more FPs in the AH than women (P < 0.05). In all subjects FPs were found in at least 1 AH. Cooling of the foot did not influence the numbers of FPs/min in the foot muscles. To study diurnal variation, all 5 muscles on both sides were monitored 3 times/day on 10 different days in another 10 subjects (5 males, 5 females). Only in the tibialis anterior did the number of FPs never exceed 3/min. In the other muscles considerable fluctuations were found, especially in the AH, where more than 100 FPs/min were occasionally recorded. In the course of the day a significant (P = 0.05) decrease in FPs/min was found for the AH muscle. In 8 subjects there was a significant correlation between the numbers of FPs in the left and right AH during successive recordings. This indicates that an, as yet unknown, general factor determines the fluctuations in numbers of FPs. Did you read that??? Normal healthy people occasionally show more than 100 true fasciculations per MINUTE in their arches!! This is not BFSers, it is normal people!
 
Exceptional caces always exist. For example, sensory stuff is not typical of ALS. But some ALS patients did report sensory symptoms. I would say here: What prevents a person with ALS to have some nerve antrapement, carpal tunel syndrom, anxiety prior to having ALS? I am sure some ALS patients started with terrible headaches 2 years before diagnoses. That doesn't mean headache is ALS sign. They may have migraine or some other problem before ALS. ALS or any other disease DOES NOT EXCLUDE some other problems in a body. The majority shows what is relevant. And the majority in ALS is that it is a "silent" disease with no pain, tingling, numbness etc. when started. This is what a clinical picture shows in most of the patients. So don't search exceptions because you will find a correlation with ALS and left toe pain if you search hard enough.
 
j_sageurge: Sure, the 6,7% did not mention the pattern of fasciculations and I never said it is did. The thing is, even if localized in one place, it is against the rule like "no weakness=no als, which is just not true. But as mentioned in few studies, this phase usually lasts only several weeks.christinasgirl123: feet and calves are the most common site for fasciculations in healthy people, its not BFS. In feet its believed to be because of the shoes causing pressure on the nerves, in calves we do not know.CautiousExplorer: Yeah, wiki is not a good reference as everyone can modify the text. Myokymia and fasciculations are two different things. However, continous widespred fasciculations in one muscle can be hard to distinquish.Quoting a book:Muscle fasciculations are spontaneous contractions of muscle fiberswithin a motor unit and arise from ectopic electrical activity in the distalaxon [24]. Fasciculations typically are the manifestation of irritability of theneuronal cell body (motor neuron) or its accompanying axons.Myokymia is a pattern of abnormal muscle contraction that producesa rippling or ‘‘writhing’’ appearance of the area involved. The change is theresult of spontaneous discharges of large motor units.What about creating a official proof for BFS? I am in touch with 2 specialists who published a lot of BFS/ALS cases. If provide all information, they would publish it as well but I was told that EMG report is the need for every patient and more than a year of symptoms (proved by the neurologist letter). Such article would be the novel in terms of BFS (widespread) and could help a lot of people in the future.
 
I would be very willing to ask my doctors for my EMG results, but I am not too sure if it is any help if they get it because-while I definately had widespread fasciculations even in my tongue and some caught on video, the only place where they could detect them with EMG were my calves, so I have no "proof" for the wide spreadedness besides my vids
 
Just a comment: When we discuss wether BFS is common or not, I think it's important that we discuss wether benign fasciculation SYNDROME is common not wehther fasciculations are common/or can be felt or registrated by healthy people. Because the name has SYNDROME in it, it means that it consists of several symptoms, not only one; fasciculations. To give an example, If we should dicuss the prevalence of CFS, of wehther a person have it or not, we can not discuss if fatigue is a common symptom! Fatigue is common, and can be the case in many many disorders and syndromes, but CFS is not only fatigue, there is a long list of crithera to be met to have the diagnosis. The same would be true for MS..and so on.I would have a MUCH better life if I only had the fasciculations, then I would not concidered my self sick, but because I'm very bothered by parestheias, pain, globus sensation, loss of feelings, I feel bad/sick, and all of this symptoms started at the same time. I'm convinced that having fasciculations are more common than having the whole BFS-picture..I'm sorry if I started a discussion that went "another way" than I ment - I just wanted to add some questions about the possible link between BFS and anxiety, wich I personally think is not as prominent as one may can get an expression of by reading, but that anxiety can worsen the experience, and that it's important to work on this issue to handle it all, I understand.
 
You know that my BFS was really severe and that actually my twitches were my smallest problem....pain, stiffness (especially hands) and paresthesias together with immense tremors and huge perceived weakness was "my" BFS. I got it after a severe viral infection with high fever, coupled with a period of immense stress. I had weird sx weeks before the twitching started. My doctor believes it is a CFS related condition that can be triggered by a virus OR stress OR anxiety , in most cases it is a mixture of it all. It is a fact that people with a history of anxiety are more prone to benign twitching than others, there's even a study about that. And about every oldtimer here will tell you to what immense extend anxiety and stress are able to feed BFS, not only the twitching, but also the tremors, stiffness and pain. Whether or not anxiety was the original cause for the individual here..who knows. But it has influence on it, yes. So far there seems to be also a huge correlation between hypermobile joints and BFS . But then again, hypermobile people are 20 times more likely to have a way above average anxiety than normal people. And 80% of those will at some point get a fibromyalgia related condition. Hypermobility is genetic....so maybe the other things too? Maybe we have a genetic predisposition to this condition and a stressful time or a virus can trigger a full outbreak? Like our high-end twitcher Matt whose relatives twitch too??Who knows? Maybe one day someone will find the BFS -predisposition gene...I wished you could see what I have seen during my therapy....rooms full of people every day that suffered from condtions like ours that were struck by that so bad they needed walking aids to manage their pain. Immense exercise intolerance not being able to climb some stairs...(and many of them twitching btw..)and how they got better and improved day by day by just working on their hyperreactive nerve system. I think my BFS was quite bad...but there...I was a slight case, truly!I am just convinced that we have a huge influence on BFS, with the way we handle our anxiety and our general lifestyle. Still if I am lazy and skip my daily physio therapy as well as my muscle relaxation exercises..it will strike back with power. Not so much the twitching, that is my least problem and I can well igore it, no, the pain and the stiffness. And the first step of getting better is overcoming the obsession with ALS . Even that means very strict rules for yourself, like no googling ANYTHING medical any more, carefully watching your reading habits on this board too, stopping self testing and constant neuro consultations on own demand.
 
christinasgirl123: WHat is hypermobility? I have one thumb that goes back more than it should, is this hypermobility? But theis joint is the only one I have hypermobile. So I am hypermobile or not? ;)Another question: I don't say I don't believe you, but it is hard to believe you have a clinic where there are many disabled persons who hardly walk and they don't seem to have any major disease. What kind of clinic is that? One can not walk and they tell him what is the reason? Is this a neuro clinic and there are so many seriously disabled persons without MND?
 
thank you christinasgirl123. always interessting to read your posts. actually is not so concerned about ALS because i have all these sensory symptoms and pain. but i am afraid of MS because of my test findings.. yes, i do believe in the link between gens and virus, and my brother have very severe CFS and it all started with a virus for him as well. (me also) but he has never had fasciculations or paresthesias and not the same kind of pain..
 

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