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Benign Fasciculation syndrome
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Benign Fasciculation syndrome

Many, many people seem to have this disorder including myself.  Many people have the same repeated questions and I was hoping you could answer some definitively for us, thereby eliminating so many people's fear of ALS or other neurological disorders.
1.  How soon can ALS be found on an EMG?  
2.  Once you have a negative EMG, do you need a follow up one months later to further rule out ALS?
3.  In a "typical case" of slow onset ALS, how soon would a patient experience weakness and HAVE abnormal findings on an EMG?
4.  Is weakness defined as fatigue or do you definite it medically in a different way, i.e., many with BFS experience easy fatigability of muscles, is this considered weakness?
5.  Are there any new medications or treatments to reduce the twitching?
6.  Are there any other studies besides the Mayo Clinic study which would help people understand benign fasciculation syndrome that you are aware of?
7.  Can bodywide continuous twitching/fasciculations be caused by stress and/or fibromyalgia?
8. Do you find that you are seeing more people with this problem?  

Thank you for your service and for taking the time to answer these questions.  You will reassure many I am sure as this seems to be a growing problem.
Related Discussions
Avatar_n_tn
1.No simple answer. Can't just give you a nice time line as it depends on many factors such as clinical presentation, severity, and levels of involvement. In a typical case, by the time a patient has weakness and fasciculations, there should be changes on the EMG. It would be very unusual if a patient who truly had ALS to have a completely normal EMG when they had complaints of weakness and fasciculations. Also, there are specific changes other than fascics we look for on EMG that point to a motor neuron disease like ALS. Not all twitching is fasciculation and certainly, not all fasciculations are ALS.

2.No. Clinical history and examination dictate what diagnostic testing is needed and when. If there is no change in the symptoms, then there is no need to repeat the test. If however, significant weakness develops or new exam findings are suspicious for ALS then a repeat EMG down the road (months to years) would be appropriate.

3.Again, by the time a patient has true objective weakness (which means it is picked up by a neuro exam), there should in most cases be changes on the EMG.

4.Fatigue is the PERCEPTION by the patient that they are weak or become weak with time or exertion. True objective weakness is found on neurological exam when the physician tests for strength and resistance of each muscle. In addition to weakness, we look for other neurological signs such as wasting of the muscles, brisk reflexes and changes in muscle tone.

5.Yes, quinine, tegretol, dilantin, magnesium, vit E and verapamil have been reported to help alleviate twitching.

6.There are small blurbs about BFS in just about every major medical textbook.

7.Yes, everything from stress to exercise to sitting on airplanes for a long time.

8.With the lay public gaining increasing awareness of this devastating disease, more people become concerned when they develop twitching and seek medical attention for it.
16 Comments
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Avatar_n_tn
WHAT GREAT QUESTIONS.
I HOPE THE DR. ANSWERS THEM ALL FOR YOU AND ALL OF US THAT ARE LOOKING FOR HELP.
I NEVER HEARD OF SLOW ONSET ALS, MY UNDERSTANDING IT ALWAYS IS RELENTLESS AND VERY PROGRESSIVE IN NATURE.
AND THEY SAY IN OTHER SITES IT IS NEVER TO EARLY TO HAVE A EMG WHEN YOU ARE HAVING FASCICULATIONS BECAUSE THAT MEANS YOU ARE AT A LATE STAGE ALREADY.
FASCICULATIONS COME AT THE END OF THE PROCESS IN ALS.
I READ THIS FROM AANOTHER DR. ON THIS SITE.
I AM STILL WAITING FOR A ANSWER TO MY LAST SET OF QUESTIONS AS WELL.
GOOD LUCK TO YOU.
I HOPE THE DR. WILL TELL US SOMETHING WE CAN HOLD ON TO.
I HAVE BEEN TWITCHING ALMOST 6 MONTHS NOW BUT HAVE HAD NO WEAKNESS OR CHANGES.
NORMAL EMG AND SO ON...
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Avatar_n_tn
AGAIN YOUR QUEATIONS ARE GREAT.
I CANNOT SEEM TO HELP MYSELF WITH THE FEAR BUT POSSIBLT I CAN YOURS.
IF YOU GO TO THE ARCHIVES ON FASCICULATIONS THERE WAS A DR. 1-2 YEARS AGO WHO MADE SOME GREAT STATEMENTS THEY WHRER STRAIGHT FOREWARD AND DIRECT.
9-12-2000
WITHOUT MUSCLE WEAKNESS BEING DEMONSTRATED ON EXAM AND NORMAL GMG NEEDLE EXAM, YOU DO NOT HAVE ALS.
HE SAID THERE WOULD HAVE TO BE ONGOING DISEASE OF SOME TIME BEFORE YOU SAW FASCICULATIONS BECAUSE THEY REPRESENT THE END OF THE PROCESS.
10-15-02
FASCICULATIONS WITHOUT MUSCLE WEEKNESS IS ALWAYS NOT ALS.
4-27-01
EMG SHOULD FIND ABNORMALITIES IF PRESENT WHEN FASCICULATIONS ARE PATHOLOGICAL BECAUSE THEY ONLY OCCUR LATE IN THE DISEASE.. THE PROCESS, ALS IS ALWAYS PRESENT BY THE TIME THEY AOOEAR.
HE GOES ON TO SAY..."I HAVE NEVER SEEN A REPORT WHERE THE EMG IS NORMAL AND THE PATIENT HAS ALS.
HOPE THIS HELPS YOU, I HOPE THE CURRENT DR. WILL CONFIRM THE PRIOR DRS STATEMENTS AS FACT IT WILL HELP US ALL..


BEST OF LUCK TO YOU.
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Avatar_n_tn
First of all, this is by far the most informative web-site  that I have come accross. God Bless each of you ( Doctors and Patients ) for taking the time and getting involved to answer the questions of many concerned and scared individuals. When used properly, the internet is a wonderful tool.

I am a 39 year old male who has had occasional muscle twitches
throughout my entire body ( hands , legs , arms , back , stomach , face ) for the past several years. These twitches never concerned me and I just ignored them. However, about one week ago, September 5th, the twitches became much more frequent throughout the day and into the night when going to bed. Also, at  the  same  time  I started feeling muscle pain in both legs while sleeping at night. The pain would go back and forth between my thighs and calves  and  was  quite  uncomfortable. Please note that I was "not" involved in any unusual exercise / activity to cause this pain.  This noticeable pain lasted a couple of days but the twitches have not stopped. Unfortunately, I started feeling numbness and tigling in both legs and arms including my hands.  I went to see my doctor who directed me to a neurologist for a physical exam  on  Tuesday,  September  10th. The doctor said that my muscles were strong and stated that "I did not have ALS" but he wants me to take an EMG test two weeks from now ( scheduled for September 24th ) and a blood test.

Here are my questions to the Medical staff "and" patients :
( I would also appreciate feedback from patients ):

(1) Is it true that muscle twitch symptoms are during the late stages of ALS ?

(2) If your muscles are currently strong and you recently have developed muscle twitches does that rule out ALS ?  What if you have had twitches for a while ( few years )?

(3) If my EMG and blood tests come back normal can I completely rule out ALS ?

(4) What other syptoms (symptoms) or progression should I make myself aware of and should I see the doctor again or get a second opinion if the current symptoms do not go away ?


Best Regards,
God Bless each of you and God Bless the U.S.A. !
SCRAPPY





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Avatar_n_tn
scrappy,

calm down.
here is what i have learned, it comes from past dr. comments on sites.
1-without muscle weakness demonstrated on neuro exam and a normal needle emg you do not have als.
2-before fasciculations become obvious you would have to have als for 5-10 months
3-fasciculations without weakness is always not als.
4-alsbeginsinsidiously and progresses RELENTLESSLY.
5-ALS PRESENTS IN ONE LIMB. NOT ALL OVER.

HAVE THE EMG STUDY AND THEN RELAX, THE EMG WILL RULE OUT ALS FOR YOU JUST AS IT DID FOR ME.

GOOD LUCK

PS: YOU MAY WANT TO VISIT WWW.ABOUTBFS.COM
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Avatar_n_tn
Please remember that a multitude of medical problems can cause twitching, not just ALS.  Many things such as benign fasciculation syndrome, stress, thyroid problems, chemical imbalances, fibromyalgia.  A clean EMG and neuro exam is pretty much the best determination if you have anything serious.  Take your doctor's word for it and look for other causes.  You can also join many other twitchers who post over at the MGH neurology web forums.  Just type MGH neurology forums into your browser.  You will have to register with a name and a password.  Then go to the NEUROMUSCULAR board.  That is where at the twitchers "hang out"  there are many supportive people there along with a huge archive of information from past posters on twitching problems.
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Avatar_n_tn
Note to both "CONCRETE" and "2MUCHTWITCHING" :

Thanks for taking the time to respond to my questions.
Your responses have helped me better deal with this uncertain
time. I will keep you updated on my test results and I will
keep reading the questions, answers and comments on this web site to better educate and inform myself. I do have some other questions that I will submit in a few days.

God Bless and Best Regards ...
Scrappy
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Avatar_n_tn
Scrappy, I am almost your case. I am 39, male and have experienced fasciculations and legs pain, specially when resting in bed. I had EMG and MRI that shown nothing abnormal.
However I still have the symptoms. In my case there is lumbar pain too.

By the way, I feel increased fasciculations when I rest after  walking.



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Avatar_n_tn
I feel a huge wave of relief in finding this website and reading your comments.  Until today, I thought I was the only one in the world with this problem.  Please direct me to the very best sources on benign muscle twitching. Thanks, and good luck to you.  My MRI, EMG, nerve conduction studies, blood work, etc. have all come back normal.  My neurologist says I need some time off work, but that isn't helping either.  Thanks for your help.
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Avatar_n_tn
GO TO WWW.ABOUTBFS.COM,
CLICK ON HERE...
THE SITE WILL COME UP
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Avatar_n_tn
Thanks so much.  I did go to the BFS site and found useful info, although I also found it difficult to get around the site.  The MGH neurology forum I can't seem to find at all.

I have noticed fibromyalgia mentioned a couple of times, but research I have done on that usually don't mention muscle twitching.

I have been taking allergy shots for a couple of years before the twitching started.  Anyone consider a connection there?

Thanks again.
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Avatar_n_tn
CAN HERNIATED DISCS CAUSE TWITCHING THROUGH THE BODY? I HAVE HAD THE TWITCHING OFF AND ON FOR TEN YEARS NOW?? IF IT WERE ALS, WOULD I BE REALLY BAD BY NOW??
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Avatar_n_tn
I'm not sure about the herniated disc question-- but I have one also.  

Anyone out there with this twitching syndrome that got OVER IT?I'd like to hear about it!!!!
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Avatar_n_tn
hi to everyone,i am a 34 yr f/m diagnosed with benign fasciculations,starting 1 1/2 yrs ago,started with pins and needles in hands and feet,sharp pains in wrists and prickly sensations lasting for only a couple months,fasciculations started about3 weeks after pins and needles,difficulty swallowing started around the same time,food getting stuck,lost 15 pounds,drank ensure,swallowing has since eased some but not completly,certain foods still a problem,but can eat most things,jaw tires at times eating,laughing,talking too much,forearms and calf pain present at times,brisk reflexes 2-3+ and symmetrical,1st EMG normal,2nd EMG 2 fascics noted,and a single run of irritibility in the T8 paraspinal muscles,3rd EMG showed paraspinal muscles show irritibility wiyh brief runs of positive sharp waves,but no deinite active denervation and occasional complex repetitive discharges seen in the paraspinal muscles and left vastus lateralis..motot unit potentials are normal as are recruitment and interference pattern,i get fatigued at times doing strenuous things,stiff neck and painfull at times,just finding it hard to understand that this is benign,my muscle biopsy i had done 8 months ago showed type 11 fibre atrophy (mild)and slight predominance of type 1 fibre,i will be having another needle EMG,swallowing test,i did a exercise test the other day at the doctors,they had me run up flights of stairs,my legs gave out on the 4th flight,couldn't go no further,the muscles pulled and burned,felt like jelly,maybe thats normal after 4 flight ,i dont know..your oppinions and comments would be greatly appreciated.,my fasciculations are everywhere,but i havent noticed them in my tongue.thanks,cathy
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Avatar_n_tn
hi to everyone,i am a 34 yr f/m diagnosed with benign fasciculations,starting 1 1/2 yrs ago,started with pins and needles in hands and feet,sharp pains in wrists and prickly sensations lasting for only a couple months,fasciculations started about3 weeks after pins and needles,difficulty swallowing started around the same time,food getting stuck,lost 15 pounds,drank ensure,swallowing has since eased some but not completly,certain foods still a problem,but can eat most things,jaw tires at times eating,laughing,talking too much,forearms and calf pain present at times,brisk reflexes 2-3+ and symmetrical,1st EMG normal,2nd EMG 2 fascics noted,and a single run of irritibility in the T8 paraspinal muscles,3rd EMG showed paraspinal muscles show irritibility wiyh brief runs of positive sharp waves,but no deinite active denervation and occasional complex repetitive discharges seen in the paraspinal muscles and left vastus lateralis..motot unit potentials are normal as are recruitment and interference pattern,i get fatigued at times doing strenuous things,stiff neck and painfull at times,just finding it hard to understand that this is benign,my muscle biopsy i had done 8 months ago showed type 11 fibre atrophy (mild)and slight predominance of type 1 fibre,i will be having another needle EMG,swallowing test,i did a exercise test the other day at the doctors,they had me run up flights of stairs,my legs gave out on the 4th flight,couldn't go no further,the muscles pulled and burned,felt like jelly,maybe thats normal after 4 flight ,i dont know..your oppinions and comments would be greatly appreciated.,my fasciculations are everywhere,but i havent noticed them in my tongue.thanks,cathy
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A related discussion, Benign Fasiculations was started.
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A related discussion, BFS was started.
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