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Thread: For those that twitch & tingle and worry about ALS

  1. #1
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    For those that twitch & tingle and worry about ALS

    Came across this earlier on the net...

    Benign fasciculation syndrome (BFS) is a neurological disorder characterized by fasciculation of various voluntary muscles in the body. The twitching can occur in any voluntary muscle group but is most common in the eyelids, arms, legs, and feet. Even the tongue is often affected. The twitching may be occasional or may go on nearly continuously. Any intentional movement of the involved muscle causes the fasciculations to cease immediately, but may restart once the muscle is at rest again.

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    BFS Q's & A's by long time BFS'er and independent researcher, Arron Johnson:

    How does BFS usually start?
    It can happen at any age, with any gender and at any time. It usually starts with a small twitch in a finger or an eye lid or in the calf of the leg and just won't go away. This usually sparks-up some curiosity in the person to look-up what a "twitch" actually is, only to find outdated information that says something to the tune of “continual twitches are an indicator of a motor neuron disease such as ALS“, which is SO un-true and taken out of context.

    How long does BFS last?
    In most cases, it is quite a while. such as years. A few people seem to recover fully but most have varying symptoms that come and go for years depending on stress levels, illnesses, not enough sleep and so on.

    Are there any treatments for BFS?
    No, not really any good one's and so far. It doesn't look like much is in sight either. After all, it is a benign condition so researchers trying to develop treatments and cures for much worse things in life aren't putting much time, money and energy into a benign condition, and rightly so. The thing with BFS is that "usually" it starts-out slow, with one little twitch and then progresses into a frenzy of twitches all over your whole body and it will usually stay that way for a while, then all on it's own (especially if stress and anxiety is reduced) they will subside to only a few a day. This is the "norm" but not the absolute rule. With that, people have tried remedies such as copper, magnesium, multivitamins, more sleep, herbal supplements, stress and anxiety reducers (be them meditating or medications) exercise and a whole slew of other home treatments. There is a very big "placebo effect" with BFS being that it is directly collated with stress and anxiety, so when a person starts taking what they believe will be a "cure", their twitches will usually subside. This also happens if nothing is taken at all and BFS sort of runs it's course. Many people that have taken remedies, have later posted on web sites stating that indeed at first, the twitches had subsided, but came back again after all. This again is consistent with taking nothing, hence the placebo effect. With BFS though, it is a matter of what works for you and staying calm and keeping stress and anxiety at a minimum, because although BFS may not be "caused" by stress or anxiety, it most certainly does feed off of it, and symptoms will go up and down according to mood, stress, anxiety level, tiredness, illness and so on. The only thing that does seem to help are medications to alleviate stress and anxiety, which in turn help some of the symptoms subside. These can be temporary meds that are used "as needed" which are called "Benzo's". Valium, Ativan, Buspar, Xanax and Klonopin are a few brand names of benzo's and they work very well at reducing severe stress and anxiety and helping you to relax and sleep at night as well. There are also long term meds for this that are called SSRI's, such as Paxil, Prozac, Celexia and so on. These commonly take 2 to 4 weeks before they get into your system and start doing what they are supposed to do. The big problem with SSRI's, (even though they work quite well once they get into your system and start working), is that the first symptoms and side effects during the first couple of weeks can be really harsh. These side effects include severe anxiety, twitching, body jolts, sleeplessness, hot flashes, tingling from hell, slurred speech,

  2. #2
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    Thank you for the wonderful information.

  3. #3
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    No problem. From what Iam told by doctors BFS is just a fancy name given to good old anxiety and stress related twitching and tingling! Benign means harmless in the medical scope of things. Now if we could just figure out a way to keep our minds from freaking out, we would be all set!


  4. #4
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    Thanks so much! This was so helpful as I have been obessing about ALS for weeks. My left arm was feeling tired and weak, but yesterday I was outside shoveling the sidewalks, and I can chop food etc... The other day the "pain" went away completely! I was a bit scared to even hear more about ALS as I am afraid I will start to look for loss of muscle control, but I'll just have to tell myself over and over again that there are no good days with ALS.
    Thanks so much! I'm feeling a little better... I doubt I'd be able to type if I really had ALS.

  5. #5
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    I can't begin to tell you how helpful the information has been. I have been terrified of having ALS, or some other neurological disorder, and have done much research on my own. But the information you give provides some dead-on answers to some of my questions. First of all, I had a twitch that started in my left index finger and would show up a few times a day for a couple of months (the sort that actually moves the finger). Then followed twitching all over my body, which caused me great deal of concern. Despite being put at ease, I do have an appointment with a neurologist in the next week (just to play it safe), but you have helped to quell a number of fears that I have been experiencing.

    Thanks.

  6. #6
    Having OCD as well as the physical symtpoms I do has gotten me in a real bind mentaly. I have read so many horror stories about ALS, and other neuro muscular dissorders and it seems so much of it is misleading. Having OCD I should know better then to start looking things up on the internet. My symtpoms seem to be pretty severe in my own mind, but I have to admit they get are not as severe when I am not worried. Still I am going to see a neurologist on September 25th to try and help me get over this current obsession. I know being 31 years old already lowers my chance of getting a pretty uncommon disease to begin with. But reading so many horrible things the last 6 weeks has really got me wound up. I also have to admit my symptoms really started after I read about them. Its amazing the power the mind has over the body. If someone like me can literaly worry themselves into being sick I sure would like to learn how to use my mind to heal myself. Its always been easier for me to assume the worst. But thank you so much for this post, I have read it several times, and it really had helped me get some relief.

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    Re: For those that twitch & tingle and worry about ALS

    I'm getting twitches in my tongue at least twice a day - I guess this is benign otherwise it wouldn't stop right? Aggggrrr it's driving me mad. They are only the slightly popping kind of feelings further back on my tongue but I think of CJD etc straight away.
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    Byron Hinson
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  8. #8
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    Re: For those that twitch & tingle and worry about ALS

    Hi all,

    I have been thinking about Motor Neuron Disease. I have achilles tendonitis in my ankles. Sometimes this gets really painful. A couple of weeks ago, I was scraping tiles off the bathroom wall. A few days after and since then till now, I have a pain and bruising feeling in my left elbow. Hurts if I twist the arm in cetain ways,tense my fingers etc etc. If Im not moving it, it is fine. If it was the removsl of the tiles in the bathroom, surely it would of gone by now?

    We know someone who has been diagnosed with Motor Neuron Disease, it started with a bad wrist.

    I'm now thinking this is what I have :-)

    Can I please have some advise, before my anxiety kicks in high. I suffer with health anxiety.

    Thanks in advance all. ( Yes I did look up symptoms on the internet )

  9. Re: For those that twitch & tingle and worry about ALS

    This post has been one of the most wonderful things I have read in my stressful fight against twitches and tingles.

    Like many of you, I noticed strange twitches in my body a while back. For me, it started back in March. First I noticed them on the tip of my nose, and about two days later they had moved to my left cheek and jaw as well. Then I started feeling numbness in my chin. And well, like many people, the first thing I did was go to the internet to look up what all of this meant.

    BAD IDEA!

    One panic attack later, I was running to my neurologist, convinced that I had either MS or ALS. My panic attack was so bad, in fact, that now the twitches had moved EVERYWHERE. Now I could feel them in every little muscle in my body, moving every single minute of the day. It was ridiculous. All day long, whether at work, or at home, or lying in bed, all my mind could focus on was "Why am I twitching so much?? What's going wrong?? And why the #*@& is my butt now twitching???" My wife thought I was having a mental breakdown.

    I ran to my neurologist, and he explained all about BFS and how it is caused by stress, and how common it is. He laughed when he said how many medical students come into his class every year, swearing they have ALS when in reality it's just simple normal stress tics. He said that doctors and prospective doctors actually do this more than laypeople. It's called Medical Student Syndrome. Students in medical school tend to imagine they have every single illness they have ever read about.

    My neurologist's advice to me was "just stop focusing on the twitches and relax. And call me in a couple of weeks if you don't feel better." He said that essentially my body is going into fight or flight mode, and I have to learn to control that.

    He also said "STOP READING ABOUT SYMPTOMS ON THE INTERNET."

    So I took his advice, and I relaxed. And that night, I was able to eat my first real meal in almost a week, because my stomach had finally calmed down. For nearly seven days prior to that, there wasn't a scrap of food that had gone into my system.

    For anyone else who has gone through "ALS panic mode" like I did, I'm sure you can relate. According to Wikipedia, that sort of thing happens to almost everyone with BFS. They all freak out. It's a fairly common reaction.

    So anyway, thanks to Henry for posting this, and thanks to my neurologist for basically saying the exact same thing to me last week. I still have the twitches (although they aren't as strong), but for now I have just learned to ignore them.

    Screw you, BFS. You aren't sending me into panic mode. I can outlast you.

    -Mario

  10. #10
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    Re: For those that twitch & tingle and worry about ALS

    Thank you for this post. My hands have been getting alot more twitchy lately and I have been worrying about it.
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