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View Full Version : For those that twitch & tingle and worry about ALS



Henry_Rollins
28-02-06, 08:09
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.

___________________

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 This usually sparks-up some curiosity in the person to look-up what a "twitch" actually is, only to find outdated information that says something to the tune of ďcontinual twitches are an indicator of a motor neuron disease such as ALSď, which is SO un-true and taken out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,

kellynwv
28-02-06, 18:44
Thank you for the wonderful information.

Henry_Rollins
28-02-06, 23:18
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!

gonecrazy
09-03-06, 20:18
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.

treyabbott1
16-03-06, 21:03
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.

aaronwinter
23-09-06, 21:38
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.

byronhinson
23-03-08, 23:38
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.

EmmaJane
23-08-08, 20:11
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 )

MarioMangler
07-09-08, 03:22
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

Alisonj
07-09-08, 03:55
Thank you for this post. My hands have been getting alot more twitchy lately and I have been worrying about it.

MarioMangler
07-09-08, 05:42
By the way, here is the full article about BFS that Henry was quoting from. It goes a lot more into detail about how BFS is nothing like ALS. In fact, once I read it, it seems sort of silly that I have been worrying about this. ALS doesn't randomly just move all over your body!

The short version of this page is basically that if you walked into a neurologist's office with ALS, he would know it right off the bat. Once you got to the twitching stage, it would mean that muscle was already dead.

It's a very helpful read for anyone who is worried about this:

http://www.nextination.com/aboutbfs/forums/viewtopic.php?t=200

precious78
07-09-08, 12:54
Wow, what fantastic information. I will TRY and stop mysef worrying now. Today I feel like I've been rub over by a bus but I know I did some exercise yesterday I'm not used to. I need to keep that at the front of my mind.

blueboy
19-03-09, 21:57
The information you have posted has been most helpful. This post is mainly to share my experience of muscle twitching with others but to also to see if other people developed the condition after taking medication, specifically Citalopram. I am a 28 year old male and was suffering from mild depression for a while so went to the doctors to seek councelling. After explaining my mood they gave me medication (Citalopram) one a day at 20mg. Before I continue I have in the past naturally had a twitching eyelid and it has gone away on it's own and it was very mild. The First day I took citalopram within 2 hours my eyelid began to twitch severely so much that it was all I could think about. It's been 2 months now and it still just as bad, the doctor denies it's the medication but it gave me other problems so I stopped taking it. I tried magnesium to fix the twitch which a nurse said would help but it's still not any better and I do not have a very stressful life. I play sport often but could probably do with more sleep. I do suffer from small twitches in other muscles mainly leg or arm but it's tiny and always been like that naturally but the eyelid is a real concern. Have been told acupuncture may help any ideas or experiences? To sum it up I feel I have been poorly advised by my GP when seeking someone to talk to I got medication that has effected my nerves in my eyelid. SoS??????????

dgr
31-03-10, 17:12
I'm glad I found this thread! I was worried I had something more serious too.
For years I have had an occasional twitch in the tricep of my right arm, and in my eyelids and my fingers, the thumb and index finger of my right hand twitched the most.
I first noticed this when I was a teenager when I would be eating or something and my hand seemed to shake when I raised a fork to my mouth. I don't think it was the hand shaking so much as it was the thumb and index finger twitching and causing the fork in my hand to wobble around.
I have noticed this in my fingers more again recently when I am holding a pin or tweezers, or doing something else similar where you need to keep your fingers relatively still. Right now if I just hold my index finger over the button of my mouse the finger will erratically twitch up and down.

I have always had stress and anxiety problems and I don't always get enough sleep so that must be what is causing this.
Worrying about why my fingers were twitching undoubtedly caused more stress made the twitching worse too.:wacko:

Gregg210
08-01-13, 21:08
Greetings everyone.

I'm glad and relieved to be here: I hope we can help and support one another. I'm Gregg from the UCLA area (Westwood) of Los Angeles. The link I saw said "UK" so I assume I am addressing folks who live in the UK.

Just a little one time history:

I am a lifelong sufferer of depression, ocd, anxiety, hypochondria, panic, overeating, etc.

I am 50 years old and in good health (I hope). I carry too much weight but am in the process of losing it with work-outs and a new food plan.

In 1987, I was convinced that I had herpes because I dated a girl who never told me she had it until I saw the medication in her cabinet. I melted down and was despondent with worry for months. I never had herpes.

In 1995, I had unprotected sex and was convinced I had AIDS. I was despondent for months. I didn't have aids.

In 1997, I had the same episode with AIDS. I didn't have it.

in 1998, I had a "foot-drop" symptom on my right foot and it came out of nowhere. The neurologist told me that I had a pinched nerve in the knee area that was causing it, but I was still convinced that I had ALS. I was fired as a schoolteacher because of my behavior when I went through the ALS scare. I was often in the school library researching ALS while I should have been teaching my class. I left my class unattended a few times because I was in such a frenzy. Even after the neurologist told me I didn't have ALS and the symptom went away, I still thought I had ALS. the thought eventually gave way to another worry.

In 1999, I thought I had AIDS after having sex again. I convinced the girl to get tested and when she sent me her clean bill of health, I still thought I had AIDS. I didn't have AIDS.

in 2007, I thought I had herpes from dating a girl with herpes. I was despondent for months. I didn't have herpes.

Every time I have a blood test for anything over the years, I am despondent for the following few months because I feel certain that the test gave me aids or another infection.

Last month, December, 2012, my memory was off and I was tired all the time and was convinced that I had Alzheimers. I went to the neurologist and he said I was fine. He told me that I should return to my sleep doctor for my sleep apnea and maybe get an adjustment or new sleep equipment. I returned to the sleep doctor, he gave me all new sleep equipment (No more leaks) and my sleep improved and my memory and energy returned. I never had Alzheimers.

My OCD, depression, and anxiety always magnifies all my health issues.

Finally, last week, I noticed that my right hand had a very, very slight tremor. I was panicked. I showed several of my friends and my parents and they didn't notice the tremor when I held out my hands or when they were at rest. I could also make the fingers on my right hand twitch and tremor when I held them in very awkward positions. Even though I artificially created those tremors, they still scared the hell out of me and convinced me that I have Parkinsons. I also noticed that the same right hand (The thumb) twitched a little when I set it down to rest after trying to force tremors out of it. It has not done that since those two episodes and I no longer try to force my fingers into tremors. I went to my parents tonight and put their fingers in the same awkward postures and their fingers trembled a little too. So I felt better about that. My mom also told me that she has a familial tremor for many, many years. My right hand falls asleep (Numb and tingling sometimes) but my doctor says it's due to my decades old cervical disc issues.

I was embarrassed to return to neurologist a month later, so I instead went to see my chiropractor in Los Angeles. He has 35 years experience and is probably more knowledgeable than most MD's I have seen. I told him about the thumb twitch/tremor and everything else. He didn't think much of it and blamed it on my neck issues, anxiety, stress, etc. I went to see him again yesterday when I was in a panic attack over the same issue and he said the same thing.

It's all very upsetting. Actually crippling. I worry so much that all I can do is online research to further worry myself and hourly exams to see if my fingers and are doing anything. I feel at a wits end.

Those are all my symptoms and history. I don't think I left anything out. (Back surgery in 1992)

Thank you,

Gregg (Westwood Village, UCLA area).

somdayillbeok
07-10-15, 08:31
Someone needs to bump and sticky this post. It’s resourceful! This helped me a lot.

My twitches began about two months ago. They started in my legs, and I would also have a twitch under my armpit on and off. I did not think anything of it until I experienced one large twitch that just took over my whole thigh. I freaked out and began googling for what this could be. The first thing that popped up was ALS. My body reacted right in that moment to my rapidly increasing anxiety. I went into full blow tears, shakes, and began to feel symptoms all over. I was more than 1000X sure that this was it, this is the reason for the big one.



Later on the next day in my horrid fear fog I decided to roam Dr. Google. Kept typing in musclefasciculation. Repeatedly. Non-stop. Until I came upon aboutBFS.com for benign fasciculation syndrome. I cried the entire time in fear that this may be worse then I originally thought. But the more I read, the more it made sense that anxiety could cause so many issues like this. I was so happy to find that so many of the symptoms of this syndrome were nothing to be afraid of. I also loved how this showed the difference between BFS and ALS.


I sat back and began to think really deep on what I was feeling. The muscle fasciculation’s were everywhere. They didn’t spread, the second my anxiety fired up they roamed everywhere! The harder I cried the worse and more frequent they became. So with learning this information I come to find that the fasciculation’s are less frequent. They still roam in my legs, arms, back, neck, butt, crotch, and feet, basically everywhere! What helped the most was that ALS starts at one point, then spreads as the damage is done, so those muscles become useless. But with BFS, they can start anywhere and show up anywhere in the body in the next moment.


I’m going to the neurologist soon, just to make sure. You know, 100%. But this is wonderful material.

jeezo678
05-12-15, 21:32
Worth a bump this thread. Had to say.

Mommyof2boys
11-02-17, 12:03
Glad that I found this thread. I am having nightmares about als now because of my twitches but they started in both legs, have been present in my eyes and arms, sides, back and thumbs (although not as often as in my legs especially left leg and foot) this has sort of calmed my nerves. I even have the sensation of foot drop, it's scraping once in a while and my leg feels weak even though I can do all the stress tests and I read on another thread someone who had exactly that too. This forum is helping me some and I really am glad I found it..

nivekc251
11-02-17, 19:16
I twitch in all of those places also. I have twitched everywhere I've been twitching for a year now. This time last year I was a wreck. I was positive that I had ALS, I would twitch at work when I would walk I would occasionally drag one of my feet, I noticed dents and what I was certain was atrophy. I got a. EMG and it helped for a little while until I let my twitches consume me. I'd strength test all the time and in ridiculous ways. I'd do it so much that I would develop tendonitis. Let it go I know how hard it is u feel your calves twitching then you want to look at them and then you get freaked the hell out , or your having a good day not worrying and you'll get one of those dreaded thumpers in your bicep. Twitching is twitching nothing more. Try to ignore and go on with your life maybe they will go away maybe they won't but the truth of the matter is that they are harmless and you are ok

jonarotz
06-11-17, 20:25
I am so grateful that I have found this post through a google search!
Like many others I have had some symptoms pop up, mainly some speech slurring/mispronouncing and some heavy arm twitching in both arms. The speech has been effected for roughly 6 months and the twitching has been about 1.5 months.

I made the same mistake with a google search...ALS...5 year life expectancy...scary stuff.
I immediately went to the doctor...blood test...all normal
EMG...no nerve damage past or present, but show that indeed my muscles are wigging out at rest.
MRI...pretty normal, some disk degeneration but nothing that would effect my twitches or speech.

I will admit all of my symptoms have worsened since reading all the ALS information. I do notice though that my twitching and speech issues are definitely more evident in high stress conditions.

I suppose with all of my tests coming back normal that I am in the clear as far as ALS goes, but I still can't get it out of my head. This post has been the most reassuring thing I have found thus far, so thank you!

melfish
06-11-17, 20:41
I am so grateful that I have found this post through a google search!
Like many others I have had some symptoms pop up, mainly some speech slurring/mispronouncing and some heavy arm twitching in both arms. The speech has been effected for roughly 6 months and the twitching has been about 1.5 months.

I made the same mistake with a google search...ALS...5 year life expectancy...scary stuff.
I immediately went to the doctor...blood test...all normal
EMG...no nerve damage past or present, but show that indeed my muscles are wigging out at rest.
MRI...pretty normal, some disk degeneration but nothing that would effect my twitches or speech.

I will admit all of my symptoms have worsened since reading all the ALS information. I do notice though that my twitching and speech issues are definitely more evident in high stress conditions.

I suppose with all of my tests coming back normal that I am in the clear as far as ALS goes, but I still can't get it out of my head. This post has been the most reassuring thing I have found thus far, so thank you!

Does anyone else notice your speech issues though?

jonarotz
06-11-17, 22:29
Yes my wife notices it when I'm stressed, otherwise not really.

Since all this has happened and I've been really stressed about it a couple of others have noticed as well. But I over think it to much and make things worse.

Your mind can really get away from you and effect everything when you're stressed. It seems like I over think everything from swollowing to my hand strength.

melfish
06-11-17, 23:27
Yes my wife notices it when I'm stressed, otherwise not really.

Since all this has happened and I've been really stressed about it a couple of others have noticed as well. But I over think it to much and make things worse.

Your mind can really get away from you and effect everything when you're stressed. It seems like I over think everything from swollowing to my hand strength.

I have the same issue. Slurring/mispronouncing words when I speak. What did your neuro say?

jonarotz
06-11-17, 23:41
Well I have an appointment next week where he is going to re examine me and hopefully he will be able to diagnosis me at that time.
I've already been assessed by him, had the blood work, EMG And MRI done.
Are you experiencing muscle spasms as well?

melfish
06-11-17, 23:45
Muscle twitches, not spasms. They don't worry me so much

jonarotz
06-11-17, 23:56
Gotcha...mine are pretty much non stop and kind of a weird rolling pattern. I've had the annoying eyelid twitch a and such in the past but they have gone away rather quickly. So that along with the speech really scared me. Both get more noticeable with stress and anxiety.

Is yours pretty consistent? Or does your symptoms get worse/better with stress levels?

melfish
06-11-17, 23:57
Hard to say. I'm always stressed :shrug:

TracyA70
30-08-18, 18:52
I was worried for almost 3 months now, I mean really worried, not being able to eat worried. it started in early June where my calves felt weird, almost numb or "heavy" & the bottom of my feet felt tingling. I went to my GP, did blood work which came back normal and she did not think It was serious but sent me to a neurologist. She sent me for a MRI of the brain and lumbar. all normal! The neurologist said nothing to worry about. Now I have added (painless) muscle spasms mostly in my calves but do show up all over from time to time and mild cramping in my calves to the list. Then like most of you I goggled my symptoms and ALS came up all over the place! Total panic attack and melt down. My GP AND the Neurologist both said they don't think it's anything serious but you read the stories about the poor people with ALS and it's impossible not to worry. My GP put me on anxiety meds that are helping me so I don't have panic attacks about it, (This is new for me, never worried this bad before). anyways, I wanted to thank you because in one of my worrisome moments I goggled again (I know I should not!) but this time I found your post! Thank you for the reassurance! Reassurance is just what I needed and I can't believe how my symptoms are almost exactly like you explained in your post. I am asking the Neurologist about BFS. This gives me a better outlook for sure!

emain1
30-08-18, 21:57
TracyA70, right there with you. Iíve been experiencing very similar symptoms over the past month, but none of it started until some panic attacks I had a couple months back. Iím in the process of seeing my PCP right now, Iíve got another appointment in two weeks. Iím praying itís nothing serious, but Iím still going to ask for a neuro referral. Just wanted you to know, youíre not alone! Hoping everything works out for you! Keep in touch!

TracyA70
31-08-18, 17:56
Good luck at the doctors! It's so worrisome not knowing or understanding what's going on with your body. Hang in there!

Nervwreck
07-10-18, 12:19
Been twitching for 14 years now. Some hot spots stay there for months. First twitch started in the shoulder blade and was there constantly for about 4 months. Ever since had them all over the place, the less you think about them the less they happen. Worst areas are inner arm and face ( had tongue twitches too and scary as hell). Sometimes so strong can even jerk your hand. Noticed a twitch on my son about 2 years ago when he was 13 and about had a heart attack ! I donít want my child be like me and feel this crap and of course I freaked out about him having all sorts of things. I was about 24 when that started to happen to me not 13! I sat and watched the back of his arm twitch for a few days but it didnít seem to bother him which scared me even more thinking what if his muscles are getting weak that he doesnít even feel it. Ughhh this twitching consumed so much of my time. I still get it and some days it last for days but I try to ignore it and they donít seem to stick around for as long as they used to. So you are not alone and it happens to a lot of us. Hopefully this would ease your mind a little .