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Benign Cramp Fasciculation Syndrome diagnosis (August 2008)

Sep 19, 2008 - 43 comments
Tags:

BCFS

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Benign Cramp Fasciculation Sy

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Cramp Fasciculation Syndrome

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clonazepam

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EMG

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EEG

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MRI

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Lyme Disease

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muscle spasms

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benzodiazepine

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Rheumatoid Arthritis

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charley horse



I am 39, will be 40 in a few months.  My main concern was that I either had Lyme disease or MS.  Both have very similar symptoms.  It turns out that I was diagnosed as having BCFS, or Benign Cramp Fasciculation Syndrome.  I wish MedHelp would add BCFS as a category, since it is kind of hard to find out a whole lot about it on the internet.  Here are a few links that I have found useful about it:
http://www.nextination.com/aboutbfs/faqgeneral.htm
http://www.ionchannels.org/showabstract.php?pmid=16343787


I saw a neurologist in August.  The neurologist performed an EMG, EEG, and an MRI.  The EMG measures the electronic signals that are traveling through the nerves after being stimulated by a small electric shock (it's pretty painless). when the muscle is shocked, it should send an electrical signal, then electrical activity should go silent.  If the EMG equipment sees ongoing signals afterwards, then that can signify neurological issues.  I am not a doctor, so keep in mind that I am just interpreting what I have been told.  If you want all the specifics, then your neurologist can give you a more detailed or thorough explanation than what I know.  However, if memory serves me correctly, that is the purpose of getting an EMG done.

The neurologist also performed an EEG (everything was done at the office, except the MRI, in case you are worried about how much all this will cost you...).  The EEG measures electrical activity of the brain, both at rest and under stimulation.  What they did during my procedure was put this cap on your head lined with sensors in a dark room and have you close your eyes.  They read the activity for about 5 minutes or so then, they switch to the stimulation part of the testing.  There were two parts, nothing too terrible.  The first part is where they had me breathe at a rapid panting pace for about 5 minutes.  Basically what that does is hyperventilate you.  That was the hardest part of the whole test, because you body by nature wants to stop doing that.  Then they have you stop once you reach their time goal.  They read that activity.  The last part is where they put a strobe light in front of your face with your eyes closed and they go through various sets of strobe light flashing activity.  It starts of slow, then progresses to super high flashing.  It doesn't hurt your eyes, the only thing that is intensifying is the amount of flashes per second, not the brightness of the flash.

I also had an MRI done at a separate independant imaging facility.  They did the MRI with contrast.  I read later that the contrast agent can cause kidney issue in a very small percentage of people; although no one told me that beforehand.  However I haven't had any issues come up, so I am good I guess.  The MRI with contrast is supposedly the better one to do than "without contrast" to detect lesions.  One thing I did read though, was that just because they don't see any lesions doesn't 100% rule out MS, especially if you or I are just developing it.

My symptoms: I had/have fatigue, exercise intolerance, muscle spasms daily, and muscle cramps that would wake me up in the middle of the night in random places.  These cramps were similar to getting a charley horse, but in my neck, bicep, traps, or hip/thigh.  That muscle would be sore or "pulled" feeling all the next day.  I also was having arthritic symptoms in both hands, feet joints, and knees.  They tested me for gout and Rheumatoid Arthritis (RA) but both tests came up negative.

Since I was diagnosed with BCFS, my neurologist prescribed me Clonazepam to take at bedtime (one .5mg tablet), which has not gotten rid of the muscle spasms 100%, however it knocks me out so I have been getting restful sleep which has helped me quite a bit overall. (http://en.wikipedia.org/wiki/Clonazepam)  Also, the negative side of taking this medicine, which I wasn't aware of before I started taking it: (http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome)

Mark

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by SteveBreakfast, Nov 20, 2008
I have also been diagnosed with benign cramp fasciculation syndrome (and idiopathic peripheral neuropathy). In addition to fasciculation of the muscles in my legs periodically, I also occasionally experience formication; that is, a sensation in my legs like something crawling around on the inside. My symptoms tend to be worse in the evening. I take gabapentin, an anticonvulsant, and tizanidine, a muscle relaxant, one to two hours before bedtime. I don't take anything during the day, because I don't want anything to interfere with my concentration and ability to function in general. Fortunately, my symptoms tend to be much milder during the day. Occasionally I still get cramps at night, but they are much less frequent and less severe than they used to be (previously, cramps would be at an 8 or 9 on a 0 to 10 pain scale). I tried Lyrica awhile back, and it was helpful for a time, but I began to notice it was hampering my ability to concentrate (not acceptable in one who teaches). I do yoga on occasion, which feels very good during and just after; I haven't noticed that it makes a significant difference in my symptoms, but it's important, for me at least, to engage in some kind of stretching and exercise. I have been told that although, like Mark, exercise makes my muscles more sore, it is not doing any damage and that the benefits outweight the short-term discomfort.

The most important part of the diagnosis, which is largely descriptive, is the first word, "benign." Some studies have followed patients with this problem, and they do not appear to worsen significantly over time. Initially, with the onset of symptoms, I thought I might have ALS (middle age male, cramping), which is a progressive and terminal illness...Thus I remind myself periodically of the full name of the syndrome...

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by Mark1968, Nov 23, 2008
Do you take Benadryl frequently?  Supposedly dipenhydramine can cause an increase of symptoms.  I only take it when my allergies are really bothering me.  Unfortunately Benadryl is about the only medicine that works really good to subdue my allergy issues, but as a side-effect my BCFS symptoms increase quite a bit as payback...

Mark



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by hhhdagame, Dec 07, 2008
Mark,

I was born is 1966, I'm 6' 4" and reach the scales at 270 lbs and have always been a big person. When I was 12 or 13 they said it was growing pains, in my early 20's it could/ might be MS. Without the other related symptoms each time the worse or the evils are ruled out and I'm still in the same boat, NO ANSWERS...  I can tell you this, I have had these problems for 30 plus years and nothing seems to change. I have tried every drug, lotion, potions, and exercises know and nothing seems to work for more than a few weeks. I've had every test that can be performed and still nothing. Like others I'm disappointed with the diagnosis "Benign Cramp Fasciculation Syndrome", I don't take this as a real answer. In the early years the Doctors would prescribe Quinine to the latest Gabapentin. I found that the Quinine worked the best but the long term side effects (morning vomiting) and what ever else can only be tolerated for so long.  I get the same feedback each and every time I see a new Doctor, and in the last 8 or so years I'm getting the same answers (BCFS). Life must go on, I try a new Doctor every few years until one day I find the one that will have the answers. Don't get discouraged, life is too short….

Regards Darren..

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by jombie, Dec 07, 2008
First post so I truly hope I can get some ideas and or help with my on-going problem. I had a severe crush injury on my left foot over a year and a half ago. No bones were broken but the leg got majorly infected and I had to have surgery and moths of anti-biotics etc.

I never recovered and have been recently diagnosed with CRPS....which i can understan and deal with all be it not well.
The more nagging issue is extreme muscle Fasiculations in the affected leg and calf especially. I work out (legs) almost 4 hours everyday and do extreme strengthening and physio yet the affected calf is wasting away and not getting any bigger...in fact it is shrinking and the muscle twitching is getting worse.
I am in constant doctors care and have been to see 5 various specialists...I have had nerve blocks, emgs, MRIs, x-rays, cat scans....all of it and no one knows what is happening.
It feels like a bug is inside my leg and slowly eating it away from the inside....very annoying and scary.

Plse let me know if anyone else has dealt with this or has any ideas what so ever.

Thanks morgan

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by Mark1968, Dec 19, 2008
I have been trying to get MedHelp to add BCFS as a Medical Support Communities forum for a month or two, but no luck so far.  Hopefully someone here knows one of the mederators and can get it added for us?

Mark


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by Mark1968, Jan 04, 2009
MedHelp just added a new Peripheral Nerve Hyperexcitability (PNH) forum, which covers the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.  You can find it at http://www.medhelp.org/forums/show/328

-Mark



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by Janette2836, Jan 04, 2009
Way to go Mark! You asked & they helped you get the new forum.  I am sure many people will be able to find the information they need here.

Janette - a limbolander from the MS forum

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by Mark1968, Jan 04, 2009
Thanks Janette.  I have been dx'ed by my neurologist as having BCFS back in August, however I still keep having other symptoms that my neurologist never has been able to explain as being part of BCFS, such as joint pain, especially in the hands, swelling of my hands, and chronic fatigue.  This is why you will see my hopping in-between the Fibro, Neurology, and MS forums.  Take care,

Mark



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by Normaljames, Jan 09, 2009
Hi Mark

I have been investigated thoroughly with similar symptoms and diagnosis as you. Have you or your doctors ever considered Haemochromatosis (UK spelling). It can cause arthritis (particularly in the hands) and fatigue as well as a load of other symptoms. It's worth looking into because it can be treated but also, if not, could lead to liver cirrhosis.

Dan (Normaljames) - a doctor with an undiagnosed peripheral nerve hyperexcitability syndrome

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by Mark1968, Jan 10, 2009
I'll mention it to my doctor, however I dont't have many of the signs listed here: http://en.wikipedia.org/wiki/Hemochromatosis#Signs_and_symptoms

Thanks,

Mark


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by alc777, Jan 11, 2009
Hope things work out for you, Mark.  I have MS and the MS can be very painful most of the time.  I went thru a year of testing before the doctor's found the problems.  I was very healthy and sharp as a whip in my mind; and know I struggle in several areas.  Best to you! And I hope you don't have MS.  Blessings

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by Mark1968, Jan 12, 2009
My short term memory has really been flaking out on me lately, really bad.  It has me concerned that if it gets any worse that it might start showing up in my daily work performance.  My wife will tell me something, and then an hour later I'll be asking her the same information!  I have NEVER had this issue before...

Mark

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by Scott69, Jan 16, 2009
Mark - I was diagnosed with BCFS about 3 years ago.  I take Lisinopril (an anti-seizure medication) daily, and take a mild muscle relaxer when I need to push myself physically.  These medications helped, but I felt amazing fatigue late in the day and expecially by the end of a long week at work.  I found a chiropractor who has put me on a regimen of nutritional supplements.  The main supplements are Vitalzym and Ambertose.  You can Google them to get more information.  I would love to talk to you, so I'm going to send you an email.

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by rames, Jan 20, 2009
I was diagnosed with ALS and had fasicualtions foot drop.  After a lot of research and taking blood tests electrolyte imbalance had been ruled out.  I had pain and numbness and it was basically spreading across my body as an EMG had indicated.  The doctors looked like I was a dead man walking.  So here are some things for all of you to research and try.  I have almost cured all my symptoms by drinking Vitamin Water.  I can feel my left toes again and I feel  a lot better in one day. I have had my issue for more than a year.  Also, if that does not work try looking at possibly having Vitamin B deficiency.  There is a nerve formula somewhere on the internet.  Wellness Nerve Formula. I bought it a week ago.  If all else fails there is Gluthiathone which is supposed to cure everything, but you have to have a lot of water with that supplement.  You also can consume watermelon, or Asparagus because your body can produce it naturally.  There is hope out there.  I took all these steps.  I would be careful about the tablet Gluthiathone though. Whole Foods has a tablet form.  Make sure you consume a lot of water before hand.

Ramesh

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by TONY454, Jan 27, 2009
To: Mark 1968

I started having many of the symptoms mentioned here in 1987 when I was 33 !  I know it sounds unbelievable,
but what's more unbelievable is that in those 22 years I have spared no expense in trying to first, get an actual
diagnosis, and secondly, to try and find some relief.  Are you ready for this?  In  more than two decades I have seen
22 neurologists,2 orthopedists,9 podiatrists,7 physiatrists,9 pain specialists,9 physical therapists,3 rhematologists,
1 reflexologist,1 rolfer,2 vascular specialists,1 immunologist,6 infectious disease specialists,4 internists,2 hemotoligists,
4 holistic practitioners, 1 endocrinologist,3 chiropractors,1 biofeedback specialist,and 3 acupunturists. I have been to
the Mayo Clinic,the Lahey-Hitchcock Clinic, NIH Bethesda,Md., I have seen every top neurologist in Manhattan's
212 area code, and traveled extensively along the Eastern seaboard to find relief. I have had every known blood and
diagnostic test known to mankind done and have seen everyone from the "best of the best" in the field of neurology,
to very questionable holistic practitioners.  The thing is, pain makes us do and seek out help from anyone, anywhere,
anyhow. In the past I've been on tegretol,neurontin,flexeril,baclofen,biaxin,levaquin,ultram,elavil,ativan,sinemet,klonopin,
zyprexa,depakote,lyrica,lamictal, and quinine sulfate. In many cases the side effects were worse than the reason I
was prescribed them in the first place. I now take nothing. I now see no one. One of my resolutions this January is
to see if I could stay as far away as possible from all these experts. Here's the bottom line. Take it from a guy who's
been there and back. Most of the so called experts anyone suffering from peripheral nerve hyperexcitability, neuromyotonia, cramp fasciculation syndrome may see are guessing at best. They just don't know what causes this,
and they sure as hell have no clearcut answer as to why we have it, wheather it's genetic in origin or acquired over time.
They like to throw around the word, " idopathic" a lot, which is their way of saying, "Listen, I believe you have this
condition, that it's not in your head, but, I really don't know how to best help you." My advice is  that you take it "one
day at a time", because honestly you have no other choice, and even though some days the pain will make your life
a living hell, you need to go on.  I'm soon to be a 55 year old guy, and how I made it this far with this much pain, I'll
never know.  I'm glad you started this forum recently. Hopefully those who read it will realize there are others out there
suffering just like them, who understand EXACTLY what they''re going through.
                                                                                                                                             January 27, 2009

                                                                                                                                                  TONY1954


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by Normaljames, Feb 09, 2009
I know where you ae coming from TONY454! Sometimes I think the searching for the answer causes more anxiety and exacerbates the symptoms.

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by Marleen313, Mar 25, 2009
I am Marleen frm Belgium and my muscles twitch 4 tot 5 times EVERY MINUTE.

My left knee muscle is already twitching for ONE WEEK now, CONSTANTLY.

I'm at the point that I am getting CRAZY about it.

There is no cure because it is benign, but it affects my life unbelievable. It's like someone is POKING me ALL THE TIME, at random places.

And the knee muscle is already twichting for one week!!! 40 times per minute!!! Almost every second!!!! I can put it on video if anyone doesn't believe.

I can't live like tis anymore!!!!!!!!!!!!! I have it since I was 17 and I am 35 now, and there haven't been 5 minutes the last 18 years without twitching.

I want to cry, because my knee doesn't stop twitching, and that's beside ALL the other muscles that twict 4 à 5 times per minute, randomly. I think I have it in the most severe form.

I really can't take it anymore. And Normaljames, even when I am VERY relaxed, the twitching continues. It has nothing to do with that in my case...........

:-(( Marleen (Belgium) (and vér depressed right now)

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by Mark1968, Apr 03, 2009
Marleen-
The Neurologist said that all my tests came back normal.  During the EMG test, my left knee muscle started twitching like crazy right in front of his eyes, so he got to experience it first hand.  Since I also have the muscle cramping (very painful...) as well, that is how he came to the diagnosis of BCFS.

Are you taking any medications to help control your symptoms?  If not, they can prescribe some Central Nervous System tranquilizers that can help control the twitching, such as Trileptal and Klonopin.  Can you get these types of medicines in Belgium?  People that don't have our condition that we are burdened with have a hard time understanding how something like a twitching muscle can really be that big of a deal, but it is.  

Please post me back to let me know how you are doing and if you could get any medicines to help,

Mark


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by Marleen313, Apr 06, 2009
Hi Mark,

Thank you for your kind post.
The knee twitching fortunately stopped after 1,5 week of twitching. I thougt I was going insane whan I wrote the message above..
Of course, every minute, there  still are 5 other muscles (ad random) that twict, so I've got twitches really àll the time, every minute, every hour, every day, every month, every year, already 18 years, and I will have it for the rest of my life.

These medications: I have always been reluctant towards these medications because they make you a zombie, and sleepy, don't they?
I  don't know of they are available in Belgium.

The twitches are like electric powerful shots, that's why it's such a burden. I let my father read what you wrote about "people have a hard time understanding", and I felt that he realised what it must be like.

I often wonder: what is the difference between "us" (BF(C)S'ers) and other "normal people"? Do we have more eletric action in our nerves? Or is it "simply" at the level of the nerve ends where the stimuli go into the muscles?
I don't know, I want to know. I read it is "the spontaneous discharge of a bundle of skeletal muscle fibers." But WHY does this happen? And is it because we have MORE electric activity in our nerves or is it because the muscle fibers are more sensitive?

I also did a tests 10 years ago, with needles etc. And the neurologist told me that my "muscle membranes are over sensitive".
OK, what does this mean really?

Kind regards.  

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by Mark1968, Apr 10, 2009
Trileptal doesn't seem to have any noticeable side-effects, at least at the doses that I am taking; Klonopin does initially until your body builds up a tolerance to it, plus lower dosages help  reduce that too.  

Those are some good questions that you are asking, unfortunately I don't know the answers to them either...  Maybe you should go to medical school and become a Neurologist!  :)  Since having all these issues, I've thought about pursuing that career myself!!!  Take care and keep in touch,

Mark


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by ed655, May 01, 2009
I also have BFS.Has anyone tried acupunture ?I just started .
Edel


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by Ginny566, Sep 29, 2009
Wow! It is amazing to know that I am not alone.  I'm 39 year old woman. Almost two years ago I woke up with excrciating leg cramps. I had been exercising a lot like 2 hours per day.  Since then I have had lots of fasciulations - verified on EMG- and pain not just cramping but burning pain.  The EMG also showed "some issue with the ulnar nerve tennis elbow in my left arm- I'm right handed, and  carpal tunnel in both arms.  I also have pain in my neck, headaches and dizziness.  Some of the wierder things I have ultimately discovered are actually fasciulations.  For example, feel like I'm having heart palpitations, but it is actually just chest muscles fasciculating like crazy.  Buzzing in back of neck - fasciculations.

All tests normal except nonspecific EMG findings and an equivocal lyme test postive IGM western blot. During EMG I had fasciculations in three separate muscles in my leg. The Doctors have decided though that it is not lyme because the igg? was negative.

Anyway, The 3rd neuologist mentioned Benign Cramp Fascic syndrome, but I still have no diagnosis, and thus am in no-man's land so to speak.  

This has completely changed my life.  I cannot exersise at all or I will get really sick. Even without exercise, I am in daily excruciating pain.  Thus, I cannot believe that it is "benign." Nothing helps,  I am afraid of some of these drugs and their side effects, especially becasue they don't know what is going on. Since I must work full time- I am a lawyer and I have small children- I try to keep going and just pretend that I feel allright.  What else can I do?  

I now believe that I have had this for years, but episodically.  I had similar milder symtoms before but did not recognize what they were at the time and they always resolved within a few months.  Always triggered by exercise though.  this time it has not resolved and appears to be getting more frequent.  If anyone has any insight or knows of a Dr. who is familiar with this condition, please let me know.  


Ginny



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by Mark1968, Sep 29, 2009
I too cannot work out anymore, as the payback for the next several days is just too much to endure.  Plus its not like the payback symptoms lessen with each subsequent workout, as occurs in a normal person that gets lactic acid buildup in those muscles but then as they work out more and more it dissipates...  

BCFS symptoms get worse the more stress you are under too, so if you have a stressful week at work, with your kids, etc, you will typically experience a flare up of BCFS symptoms as well.

Hope this helps a little in some regard,

Mark



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by Ginny566, Sep 30, 2009
I have not noticed the stress connection.  But if I get a viral infection, afterwards I will get really sick.  Also I just have periods where I will be really bad for like a month with pain episodes like 3 or 4 times a day for like an hour.  Then things will improve marginally - never back to normal.  I can't discern any reason for these "flares"

My neurologist, - the third I have seen, has attempted to get me to take all manner of heavy duty drugs to treat symptoms, but I am resistant because this all this got worse after I took reglan.  Before that there were fasciulations but not pain associated with them.  I don't care about the twitching, I just want some relief from the pain/ dizziness/ etc. So far the only thing that relaxes muscles is Valium which I do not want to take because it is addictive.   Any suggestions of drugs that work not toxic.   By the way I don't have the antibodies for potassium channel problem; that came back negative.

To the person who wants to try accupuncture- Don't.  I got worse after three sessions- No relief.

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by Dgufo, Oct 04, 2009
Ginny566
I am a family medicine physician just diagnosed last month with cramp fasciculation syndrome after having swine flu the month before. I too had the "palpitations" that turned out to be fasciculations of my diaphragm. The fasciculations and cramps are worse with exercise, alcohol withdrawel, caffeine withdrawel, sleep deprivation, anxiety - anything that stimulates the autonomic nervous system and increases the gain at the neuromuscular junction  where our misbehaving voltage gated potassium channels are.

By the way, check ou the enormous thread on this http://www.inspire.com/groups/rare-disease/discussion/isaacs-syndrome/?page=45#repliesat

David Gordon MD



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by rick12, Oct 08, 2009

Greetings to all.
It's Rick here from Sydney Australia, I have been posting on the site David mentions for over a year and a half.
I have been diagnosed with Isaac Syndrome /Neuromyotonia and can relate to most postings here - even the
buzzing in my neck, enough for my wife to feel. The symptoms described  here strikingly similar.
It is a bizarre and frightening disease - it can go from mild to acute affecting your daily life. It can also be confused with ALS
It is often not recognised readily by Medical Practitioners. Thank goodness I was diagnosed reasonably quickly compared to some who are posting here
I know many have suffered like you all here - I was the same until finding my Doctor and being diagnosed  promptly.
I have without question improved in the last 20 months since diagnosis. I want to mention my treatment at the moment
and point out I consider nothing will happen over night. Improvement will take time and it is a matter of finding the right combination of drugs.
At the present time the following drugs. Tegretol, Gabapentin and Endep at night, Acupuncture -Yes it works for me relieves the stiffness and pain - I know it won't cure me. Massage and warm Spas also help.
As you know it's not easy living with it but I have kept at it and got out of the black hole I was in. However sometimes you slip back in.
By the way Ginny, it is accepted for the Potassium Channel problem you mentioned are only detected 40 percent of the time. I was antibody Negative but still diagnosed with Isaac Syndrome.
I wish all of you the best and trust you review the thread Doctor David has mentioned - I can thoroughly recommend it.
Then you will know you are certainly not alone.

Rickt
Sydney Australia.

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by JustSN, Oct 21, 2009
Hi Guys

I hope that this group is fairly active.

Don't know what you think, but it seems to me that good quality information on Benign Fasciculation Syndrome is lacking. The research base is lacking too. I'm a Health Psychologist with a fairly new diagnosis of BFS. Thought I'd try to fill the gaps a little, so I've set up a survey on Surveymonkey (managed to keep it down to 10 questions so it's free)

I'd be grateful if you could head on over and fill in the forms - a matter of minutes. I will post the results here if I get 50 completed forms.

If you have any links outside this forum or you post to any news groups, please feel free to pass the word on.

The link is: http://www.surveymonkey.com/s.aspx?sm=ajF_2f1DDmRIm_2bcOzBPUpeGg_3d_3d

All the best.

Simon

(p.s. This isn't some advert for SurveyMonkey)

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by 724Alexis, Dec 02, 2009
Dgufo
Are you taking any action to reduce the frequency of diaphragmatic fasciculations? I too am looking for a way to better control this condition.

TIA

Lex

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by DougV42, Dec 22, 2009
by DougV42, 12/22/09
Hi Genny,
After years of seeing doctors and explaining my symptons, I was refered by a nuerologist to see a muscle and nerve disease specialist named Dr. Aziz Shaibani located at St. Lukes medical tower in the Medical center in Houston Texas. I have been having the symptoms for years and as I am sitting here on the computer now I have had at least 10 spasms in at least 5 different muscles. I met with Dr. Shaibani yesterday and after looking over previous test, MRI's, blood work and a questionaire that I had filled out before the appointment, it took him about 20 minutes to diagnose me with CFS. He is running some kind of rare & special anti-body blood work to back up what he feels it is and he has put me on Trileptal and I will be following up with him in Jan. after the results of the blood work comes back in. This is the link to his web sight www.nerveandmuscle.org
Hope it's helpful.

Doug

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by RED327, Mar 11, 2010
I have been suffering from nocturnal  foot cramps for more than 10 years sometimes getting up 3 times a night to walk the floor for 20 minutes or more to stop the cramp. My neurologist did the both nerve tests and told me I had BCFS. He put me on KLONOPIN 0.5MG .  Before that I had been on most other drugs for my cramps but after awhile they stopped working. Klonopin worked fine for a few months, then they started again. Instead of going to the doctor to increase my  klonopin [ I hate drugs] I theorized that if the cramps go away when I am standing up and I can't sleep standing up, what would happen if I raised my headboard on my bed, would that help ? I raised it 5 1/2 inches. It stopped the cramps. after a week I cut my medication in half, still no cramps. another week and I stopped all medication.and have been cramp free for 6 weeks now. I had been tested for blood circulation in my feet, it was very good. Neurologist doesn't think that is a factor. I don't understand it but I hope the raised headboard keeps working AND I HOPE IT HELPS YOU TOO.  RED327

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by e_kay, May 11, 2010
I'm a 34 year old male, and I also have recently been diagnosised with BCFS. This is getting on my nerves. I have gone for several months with the answer. "We don't know, but we think." I now just want relief, but because I'm not working, I can't afford the medicine. Can someone tell me how do I get help, even with these joint pains.

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by Mark1968, May 12, 2010
I do not know of any natural remedies if that is what you are wanting to find out.  I am not saying that there aren't any out there, just that I am unaware of their existence.  Basically, the twitching (fasciculations) have to be controlled with central nervous system depressants, and the cramping controlled by muscle relaxers.  There is no "cure" that I am aware of.  

My neurologist told me that the symptoms usually get lesser and lesser the older you get, and usually diminish in your 50s or 60s.  I'm not sure if I believe that or not though, because I started having this problem at around 38 and now at 41 my symptoms seem even more widespread just over these few years.  If they keep progressing at this rate, then I will be a real mess by 50.  For example, yesterday I was on the phone at work, I had an itch come up in the middle of my back where your traps meet the base of your neck, so I reached up and over to scratch it, no big deal, and both of my traps completely starting cramping up on me!  So here I was trying to maintain my composure on the phone while trying to pull myself out of a muscle cramp... good times, right?

In your case, you may be able to apply for some type a state medical benefits, or be able to find a free or reduced rate health clinic that some communities provide as a volunteer outreach.  I'm assuming that you are an American.  Send me a personal message telling me what state you live in and I will see what I can find out from my end.  My wife is a nurse, so maybe she will come up with some ways that you can get care.  I'll talk to her and see what she can suggest.

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by Persevere91, Nov 07, 2010
Dear Mark,

My heart goes out to you who suffer because my twin has suffered a lot with many illnesses after a transfusion that poisoned her. We never did rule out the Lymes.  I heard about Doctor Joe in California from some friends of mine who suffered with Lymes disease that got help from him. Dr. Joe has been helping numerous patients for 35 years. He is 73 and has blood vessels of a 15 yr. old. Been given Father of the Yr award by Amer. Diab Assoc and there is Nobel prize validation on what he uses. IT WORKS. I almost lost Bev recently and I am grateful to him coming in my life and so is Bev. We have had miracles, absolute miracles in just a broad spectrum including severe pain. I also have a severe neuropathy person on Gabapentin who is virtually no longer in pain after 1 mth. I would like you to come on a call some Wednesday and share your disease with Dr. Joe and hear his answer. I believe in all my heart you will get help and no you don't have to go there. My name is Sherry at 612-272-7599. May God Bless you.

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by bigo2424, Dec 17, 2010
i have had bfs well over a year very painfull the best drug i have found to work is pot.i have tried every med you all could think of.pot and ocycocet work it really slows the spasms at night

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by buzzards27, May 07, 2011
Just reading through the thread after searching for what to call this calf muscle twitching. I recently discovered that in addition to a long history of back pain (two surgeries) and calf cramping I have signs of BCFS.

I was recently out walking for a few miles. When I returned home and laid down to rest I crossed my left leg (leg heal to right knee) and discovered that the calf muscle was "ALIVE". My calf muscle looked more like a burlap bag full of cats. Dozens of random twitches going on at the same time, hundreds in a minute. Funny thing was I didn't feel any of it, if I hadn't had shorts on I might not have noticed the twitching, It went on for hours and I can still see moderate "activity" three days later.

I have had two laminectomies (sp) on L4-L5 and more recently L5-S1. The later involved sever left leg symptoms, toe drop, intense pain, numbness, sever calf cramping, and a lot of indescribable sensations. Since that operation the calf cramping has been a regular event, 3 or 4 times a weeks. I have even woken up to find myself standing in the bed with a cramp. Most cramps subside with a simple toe lift after a few minutes, but the pain from the cramps can last for days or weeks for a bad one.  At times I can flex my lower back muscles and feel sensations as far down as my toes. I am left handed and there is no atrophy in the left leg.

I suspect some of my BCFS is caused by the back issues. If nothing else the back problems must be making the twitches pain free. I'm wondering if anyone on this thread has any history on back problems. Maybe it is something else to look at,

Al

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by luis917, May 08, 2011
1am 43 and i and i have all those things that everyone describe above but i have those twitching every minute for about 4 years but i have no pain and i havent even bother to tell my doctor, any advice my name is luis living in toronto canada and i dont have any other health issues

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by northbaygirl, Apr 04, 2012
Who is a good doctor to see for confirmation of Isaac's syndrome?  We can go anywhere in the US. Husband has been to Mayo and misdiagnosed.  Has every symptom you have described in previous posts.  Is it with our while to go to NIH? Or is Johns Hopkins better?  He also has a rare heterozygous MTHFR mutation which diminishes his ability to methylate, affects B vitamin utilization in the body and makes taking pharmaceutical medications of any kind a nightmare.  Is anyone else suffering the effects of MTHFR?

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by richardrailton1, Jul 13, 2012
Has anyone reccomended using cannabis? Seems to me like a good solution. The Wikipedia page on BFS stats that it is effective in mitigating the severity of the symptoms.
I have started to get involuntary muscle twitching over the past few years among other symptoms that come and go but have yet to get it checked out but I can tell you from personal experience that the use of cannabis helps reduce stress and I have no muscle twitching during periods of continued use. When I stop use for what ever reason the twitching comes back.
I originally thought the twitching was linked to over exertion as I used to do a lot of triathlon training and lift weights but after an extended period of time (2-3 month) with relatively little exercise the twitching continues.
Hope this helps someone.
P.s the only people I would advise against the use of cannabis are ones with a family history of mental health issues, otherwise youre good to go.

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by 195656, Oct 30, 2012
I am healthy, and have constant fasciculations, only in my calves, with cramping in toes that will distort them,and restless leg syndrome.  I don't take anything for it, just try to ignore it, and/or live with it.  Luckily, I don't have lots of pain, and can still run.  Have a bit of essential tremor in my head also.  I don't understand why people go to like 50 Dr's if several have done tests and told you that you have a condition that is treated symptomatically with medications.  The Dr's can only diagnose and treat what is known.  There are many diseases medicine just hasn't figured out yet!  There comes a time when you just have to deal with what you have the best you can.  Medicine doesn't have all the answers and you just end up wasting what life, time, money you have left searching for answers that aren't there yet.  Unless, as someone said aove, you want to study medicine yourself and research the associated syndromes.  There is a cannabis type pill called marinol, maybe it would be helpful if someone is unable or unwilling to smoke pot?

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by philo2012, Mar 31, 2013
I can give you a simple answer to your question about why people go to like 50 doctors to have tests done. BFS is an exclusion diagnosis. Basically one would be diagnosed with BFS when other causes of twitching cannot be found.
It does not mean there is no cause to the fasciculation but simply that the medicine does not know what causes them. IMO being diagnosed with BFS is kind of a way for doctors to say... ok go home and live your life. This is not serious.
It is good to know that MND, ALS and other serious conditions have been excluded but how about Lyme for example. Lyme disease cannot be excluded with certainty (no conclusive tests exist at this point) especially when other neurological symptoms are present along with the fasciculations. Additionally I am not a doctor but I am sure fasciculations are symptomatic of many other diseases. In a word, some people diagnosed with BFS keep looking because they do not accept an exclusion diagnostic when they do not feel in good health.
I have been looking for several years going to many doctors and along the way after dozen tests have been diagnosed with primary hyperparathyroidism. Is that causing the fasciculations? I cannot be certain but I will keep looking until my health problems are resolved. Of course if you feel healthy and well and are not bothered with your fasciculations then stay home (or go out ) and enjoy life. But you have to understand that not everyone diagnosed with BFS have the same symptoms as you.

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by Mark311, Jun 02, 2013
After a year of trying to figure issues with spasms in my throat and stomach, I started to get a pain in my left knee. Over time I started to get muscle twitches all over and severe muscle cramps in my calves. I went through extensive testing with various specialists ENT, GI, Rheumatologist, Neurologist, etc. All test and MRIs appeared normal to include EMG. I was referred to the Neurology clinic at the University of Virginia. They gathered my historical data, ran another EMG, performed a clinical exam. Everything seemed normal though I didn't feel normal. Then Dr. Burns performed a specific PNH protocol on another EMG  in a hunch and presto! BFCS...probably viral related as I was battling something at the onset of this. Trileptal was prescribed and my Quality of Life increased. I can't exercise like I use to and I am careful not to over exert. I hope it stays this way as this has been physically and mentally draining.

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by susyblue62, Nov 18, 2013
THIS MAY HELP YOU TOO - TRY IT PLEASE AS YOU HAVE NOTHING TO LOSE!

Hi my name is Sue.

Early this year I developed a dreadful virus that ended in me having a cough for over 4 months (and I pulled a rib muscle in the process!). Shortly afterwards I started getting strange symptoms in my legs. They started with the occasional twitch which got stronger and more frequent, and then I got bouts of pins and needles too, then I also got 'electric shocks' in my leg muscles that made me collapse sometimes when walking and fourthly I got spasms and cramps too. All these became very frequent (every few minutes) and the cramps and shocks were painful. I went to see a neurologist and had various tests as I have 2 first cousins who both have MS. Thankfully the tests revealed I do not have MS - she said I have a neurological condition called Benign Cramp Fasciculation Syndrome - a peripheral nerve hyper-excitability disorder. Most people have never heard of this - I hadn't and I'm a nurse! There is a lot of controversy about this condition and it's causes/treatments. Very little research has been done as it is not a life threatening condition, so I guess not many people want to invest money in it, so I had to rely on forums and information on the internet for some self help. When I checked these out I saw the number of people experiencing these symptoms is enormous, and whilst not life threatening, they are chronic and uncomfortable to live with each day. The condition is exacerbated when the body is stressed psychologically or physically in any way, and I have found throughout the year that whenever I got a bit stressed (like when my husband got diagnosed with oesophageal cancer in June) or developed a virus (like I did in September) I was totally debilitated like I had chronic fatigue. I had tried a few suggestions from people online, but nothing seemed to help, so I figured it was just something I would have to put up with.

My husband made some elderberry syrup in September as we heard it was good for immunity so I thought I would try it too, just to boost my immune system before the winter and hopefully avoid any colds. I only took it as I liked the taste and wanted to avoid a cold, but amazingly I noticed the pains in my legs became less and less. To begin with I thought it was just coincidence until Graham was in hospital. I noticed one night that my shocks and twitches had returned, and then I realised that since I was out of my usual routine I had forgotten to take the syrup for 3 days! I started to take it again and lo and behold they disappeared again. I couldn't quite believe that I may have accidentally stumbled on a cure for my symptoms, so I have tested it out twice since and each time the same happens! I am delighted to say that I just take one dessert spoonful in my porridge each morning and now have virtually no symptoms apart from an occasional slight cramp in my left thigh!! I am ecstatic and cannot tell you how much this has changed my life, and so I wanted to share this with you.

Fellow sufferers I would urge you to try this for yourself. Recipe available at http://www.greenmanherbalist.co.uk/

We fortunately discovered this when it was elderberry season and made loads, but if it is out of season I gather you can buy it online, although I have not tried this myself so I cannot vouch for how well it works!

Hope this helps you!

Sue

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by InspiritCanada, Apr 13, 2014
Just to add some more information = that this can be congenital. I am a holistic nutritionist (in Canada) researching a complaint by my client who is 56 years old and has had BFS all her life. In her case it is genetic: her dad had it and all three of her siblings. They report such severe cramping it can be hard to hold a toothbrush or wash their faces. Like many of you they find the term "benign" inaccurate because their condition is so disabling. They are not taking medications for it; they have tried magnesium/epsom salt baths but no help, and my client has been tested for magnesium (is not deficient).

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