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PostPosted: August 26th, 2002, 9:23 pm
by Arron
there is no known cause of BFS Annie. Some neuro's say it is simply "irritated nerve endings". other's say it is some kind of auto immune syndrome and others say it is because of cosmic dust or the alignment of the moon and M-31... no one really knows for sure yet and being that it is benign, doctors aren't paying much attention to it while there are still no cures or treatments for other nastier things out there, and I'm cool with that. I just wish they'd update their info on twitches and ALS, because it is not the case 99% of the time and it would be nice if the nedical schools started teaching GP's about BFS and Fibro so they can help us instead of giving us blank looks and sending us down the road with no information.

Origin of BFS

PostPosted: August 27th, 2002, 12:12 am
by RaeKwon
I use to be of the opinion that BFS was something to do with (and only do with...) the brain misfiring and causing different muscle fibres to contract. (Well along those lines any way.) But now I'm not so sure... The reason I say this is that many people get relief from twitch "hot spots" by icing the affected area. I know when I rub a hot spot that can make it go away (for a while at least). Some people say that their calf muscles twitch badly when they put them in hot water etc. My point is, that these examples point (in some way) to the origin of the twitch being with the muscle rather than the brain (but probably a mix of both?)

Who knows!?

bfs cause from the brain or neuromuscular junction?

PostPosted: August 28th, 2002, 3:52 am
by Dr. Jon
It certainly would be helpful to know the cause of bfs. I have a degree in applied nutrition and am trying to experiment on myself with different nutrients/amino acids/ herbs but not knowing if the mis-communication is comming from the messanger (brain) or the receiver (neuro-muscular junction) it makes experiementing even harder. I am currently using L-theanine which research has shown to reverse glutamine induced neuro toxicity.(which basically messes up our neurotranmitters through hyper excitability). Seems to be helping but could just be temporary placebo!

PostPosted: August 28th, 2002, 10:01 am
by Craig
I just started feeling what I think is being described as "internal tremors" about two weeks ago. It feels sort of like a vibrating sensation and I get them mostly in my feet, legs, and hands. They are suttle enough that I almost don't notice them, but they are definitely there. Do "internal tremors" feel like a vibrating sensation or are they different?

PostPosted: August 29th, 2002, 1:08 pm
by Arron
Craig, you are feeling what BFS'ers call "vibrations" or "buzzing". They are REALLY common with BFS. tremors are an actual "shakey" feeling like trembling. Intenal shakes are more like what you feel after a serious night of partying and you are really hung-over the next day with the shakes, only they are inside so you FEEL like you are shaking but you are really not on the outside.

Buzzing muscles like what you have been noticing are very fast fasciculations. Some are slow, some hit once and leave (we call those thumpers), others hit and stay for a long time, some contract a muscle very slowly, hold it and then release it and can do this for hours, days, weeks or more and other's are so fast and small that they vibrate. It's all strange but a normal part of BFS.

Vibrations and Buzzing

PostPosted: August 29th, 2002, 5:56 pm
by Davey
From what I have seen (in posts here, at MGH, and the Cleveland Clinic), vibrations or buzzing are a common symptom for BFS. Tremor is also seen, but my understanding is that it is essential tremor, not a resting tremor. There are specific frequency ranges for tremors from Parkinson's disease. I know I've been buzzing for a long time. Fasciculation (small twitching/fibrillations) also needs to be distinguished from myoclonus and coarse muscle twitches (large muscle group contractions).

In response to the poor guy who read about fasciculations and ALS in a "home medical guide," I think I know which one you are talking about!!! :P I bought a copy of the Merck Manual when my father had leukemia. I picked it up when I started twitching - BAD IDEA!! But I'm over the fear.

I am on Neurontin (300-600 mg at bedtime) for my Restless Leg Syndrome. It doesn't seem to help my BFS, though.


PostPosted: August 29th, 2002, 8:30 pm
by Arron
Hi ya Dave, I think you were referring to me about the misfortune of reading a medical manual on twitches and finding only ALS. man did that suck! I'm over that now though. Knowledge is power for sure.

You're right about the tremors being essential tremors. Resting tremors aren't that uncommon either though. You look at older people and their arms and legs have tremors but it doesn't mean it's Parkinson's simply because they are resting tremors. My mother in law is a nurse and she brings home all of these JAMA books with all kinds of information and you are dead righht about the "frequency" of the tremors meaning something else. Pretty much the way I read it (when I snuck in to read her books) was that the slower the tremor, the more "probable" it is something not so good. fast tremors indicated nothing according to that book, but who knows? It was one of those books that said "fasciculations are a precurser to a motor neuron disease such as ALS", and we all know how wrong that statement is! From what I've seen , BFS is about 10,000 times more common than ALS ever thought of being (figure of speech, not a real numbers). If my memore serves me correctly, there are about 80 cases of ALS diagnose a day in the US and about 5,500 people a day die in car accidents. and who knows how many a day are diagnosed with something like cancer and other things. The numbers are WAY up there compared to anything like ALS. It is extremely rare and there are only about 30,000 documented cases in the US today. Who knows how many BFS'ers are out there. They come out of the woodwork and some have had it for decades and just never thought anything about it.

PostPosted: August 30th, 2002, 7:27 pm
by charlene
anxious, I also get lip tremors exp when I drink something and also when I smile. I've had BFS for 3+ years(self diagnosed) the lip tremors started about 2 1/2 years into this. I,ve seen 4 neurologists (all highly regarded,none ever metioned BFS, although the term benign was used.) ,had extensive testing...MRI( brain and spine), EMG x 2, a spinal tap and many blood labs.... all normal. It all started after having had a mild viral infection(cold). Two weeks later I started getting twitching in my little toe. It quickly progressed throughout my entire body. Some days are worse than others, but the twitches are always there, often in the thousands. Other symptoms include numbness and tingling, burning sensations, blurry vision,"zinging" sensations, muscle pain...ouch :!: and tremors in my hands and arms. The tremors in my fingers are like a rapid side to side movement. These are all symptoms I have read about that are related to BFS. I also get chest pain on a daily basis, palpations, and have sustained clonus in my plantar reflexes....anyone else experience these additional symptoms and are they also related to BFS? I found this web site to be very helpful and wish I had found it sooner.Thanks to all who post here :)

PostPosted: August 31st, 2002, 12:35 am
by Arron
Hi Charlene, can you describe the "zinging" sensations you get. I think I've had those and that is how I described them too. I also get the occasional blurry vision. I just thought it was eye strain or my astigmatisms changing or something like that. I have tremors and well, just about everything you described was me to a T. Please elaborate a little more on some of your symptoms if you would. It would help me and many other's for sure.

PostPosted: August 31st, 2002, 10:48 am
by Annie
DrJon, Arron, and others who have expressed your concern: I truly appreciate it. My story sounds very similar to those of many other people on this site. I first started experiencing fascics in May of this year. They appeared first in the back of my left hand, near the base of the index finger, and soon thereafter spread everywhere – my calves, forearms, hamstrings, shoulder, chest muscle, etc. Tiny muscle flutters – twitch, twitch, twitch. I could see the muscle fibers wiggling under the skin. I looked up muscle twitching in my home medical manual and on the Internet and immediately found references to Parkinsons, ALS, and MS. I became completely panicked. I went to my GP in a state of great alarm. I was so agitated that by the time I got to the GP’s office my resting heart rate was 120, my blood pressure had shot up, and the first thing she did was order some heart tests (!). They were normal. She then ordered a whole battery of blood tests – thyroid, B12, glucose, etc., etc. They also came back completely normal. At that point she said she didn’t know what the problem was and referred me to a neurologist. I waited a month before I could get in to see the neuro. I was in a panic for the entire month, convinced I had ALS. I got mentally busy figuring out how I was going to say goodbye to my dear family, my colleagues, my enjoyable job, my mountain biking passion, and everything else. Finally, I was examined by the neurologist. She took a complete history and performed what seemed like a very thorough neurological exam. At the end of about an hour she told me that my neurological exam was completely normal, except that I was trembling a bit – which she attributed to anxiety (no kidding). I said, with some incredulity, you mean I don’t have ALS? Absolutely not. Parkinson’s? No. MS? No. Then what is it that’s going on here? “You are experiencing benign fasciculations.” (This was a new one to me – this was a term that I had NOT encountered during my panicked Internet searches under “muscle twitches” and “tremor.”) I walked out of the doctor’s office feeling stunned, still not quite believing that I had been given a new lease on life. For weeks afterward, I felt quite convinced that the neurologist must have made a terrible mistake! Then I discovered this web site and was amazed to find so many other people with similar symptoms. I discovered at this site that twitches with no weakness means no ALS. For the first time it dawned on me that I really did have a benign condition. Since then… the fascics have continued. Some days they are more, some days less. I can’t see any particular pattern. No pain, no weakness, no disability, just twitch, twitch, twitch. And yes, I’m still riding my mountain bike and enjoying my family and my work! This Internet community has been a real godsend of support for what seems like a very, very curious condition.

tremors, clonus

PostPosted: August 31st, 2002, 3:45 pm
by Anxious
Hi Charlene, it's incredible when you describe your symptoms because they sound exactly like mine, and the symptoms are not very typical of others posts on this site. The lip tremors I have mentioned before, the zinging or buzzing feeling I can get anywhere but when I'm really anxious I get it on the outer side of my left ear. I also have clonus in my plantar reflexes, which really freaked me out, cause I'm a medical doctor, and I know what clonus can mean...good thing however that my best friend is a neurologist...he examined me and said that all was fine, to be sure he did an MRI of my cervical spine which came back 100% normal. I've had 3 EMGs now, and NCS's which have been normal. I'm just writing this to let you know that you are not alone, and although, some of these symptoms are not listed in the list of BFS symptoms, I feel like they probably have something to do with it. My neurologist friend won't say it's a part of BFS but he says that since all the tests have come back normal there is nothing to worry about....I can see from your post that you have had extensive testing as well, and all is well, which is wonderful. Take Care

PostPosted: September 1st, 2002, 11:09 am
by charlene
Thanks so much for your replies to my post. It is reassuring to know that others have many of the same symptoms I have experienced and are other wise leading normal healthy lives. I try not to dwell on what the future holds and try to keep a positive outlook. Arron you asked about the "zinging" sensations I experience and the best way to describe them is like a repetitive zap or buzzing sensation mainly in my feet that starts on the inside of my calf. Similar in nature to the twitching but instead of a twitch it's a "zing"(like a low level electrical shock). I also seem to be sensitive to outside vibrations...Sometimes it is difficult to tell if they are from an internal or external source. Anxious, It was so reasuring to know that someone else also experiences the clonus....I was very freaked out to. All I could think of was some kind of upper motor neuron disease. It may also be reasuring to note that my older brother has had very similar symptoms. His started over ten years ago and he remains healthy today. In fact his symptoms have substantiality improved. This fact gives me a lot to hope and may do the same for others with this condition. Does anyone else have a family member that has a similar conditions? I also have acid reflux disease, IBS, and experience frequent sore throats but was perfectly healthy before all of this started......Just a note: I found that limiting caffine intake seems to lessen my symptoms. Take care everyone.

PostPosted: September 1st, 2002, 9:31 pm
by Debbs
I was just wondering as Im not a medical doctor, Charlene and Anxious you both mentioned clonus in your plantar reflexes but what does that mean ?Also I have those little electrical impulses in my legs kinda like a stinging sensation, is that what you mean Charlene ?and is that a part of Bfs ?

PostPosted: September 2nd, 2002, 2:41 pm
by SoJerseyMom
I was wondering what "clonus" is too. If you mean muscle spasms in the foot, I have lots of those. If I extend my leg and point my toes, the muscles sometimes go crazy. Also, have lots of those little electrical "zings".

Anybody else have a feeling like someone is splashing water on the back of your legs?

PostPosted: September 2nd, 2002, 4:56 pm
by SusanSid
I, like most of you, get those electrical buzzing feelings. I describe them feeling like a low level buzz from a razor which is set next to you. Do you know what I mean? It comes and goes and is primarily in the foot and calf area, but have felt it in the hands and occasionally in the forearms. They have gotten me worked up only to go away on their own.

I have days where I'm feeling pretty darn "normal" only to be followed by a day of lots of twitches and muscle cramps...which usually bums me out in the end. Like they all say, BFSers have good days and bad days. I'm still trying to figure out what helps and what doesn't. I do find that I tend to be hyper alert to any type of body sensation and must watch that I don't over react!