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Benign fasciculation syndrome
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Benign fasciculation syndrome

Dear Doctors,

I am hoping for your overall opinion and views on my situation after numerous tests:

I have had fasciculations for about a year now. Started in calves
- have spread to entire body ( mainly legs )

Have experienced buzzing in groin area for 3,5 months now.The buzzing is there everyday, comes and goes. Twitches have gotten worse since the buzzing started.

MRI brain, lumbar is normal. Bloodwork is normal( Lyme, B12, calcium, etc ) Neuro examn 2 month ago was normal.
No weakness, nothing else.

Cervical MRI a year ago shows: Osteophyte formation at C5/6 with disc degeneration. Foramina stenosis on the left side.
Kyphosis of the C spine is also noted. ( I have pain radiating to the arm from this )

Question reg. C Spine:
Could all my other issues be caused by this neck problem?
And COULD the situation  - according to your epxeriences -possibly stabilize so that I can avoid
surgery ? ( I am only 34 years old )

Question other symptoms:
If the other symptoms are not neck related coud it be benign fasciculation syndrome?
Sometimes I find it hard to beleive that there is such a syndrome without another reason...
What are your long term experiences on patinets with BFS? Is this really a seperate syndrome? And not related to ALS; MMN, Gullian Barre. PNH etc etc...?

Is the buzzing I have in one  area typical for BFS?

Any ideas of what this could be otherwise?

Sorry for the long mail. Thank you very much for your time.

Joso.
Related Discussions
Avatar_n_tn
1) trapped nerves can cause faciculations but only in the area that they serve. widepread fasciculations are more suggestive of a seperate benign fasciulation disorder or overactive thyroid function. Even if a pinched nerve was causing the fasciculation, this would not be an indication for surgery anyway - be careful what you attribute your sympotoms to before jumping into surgery

2) yes, it is a seperate syndrome, we do not know exactly what causes it but we know it is benign and people live normal lives

3) Its hard to say as I do not know what you mean by buzzing, for example an audible buzzing noise, or a sensation which could be a fasciculation in the perineal area (which contains a lot of muscles)

4) other causes of fasciculations include an overattive thyrois, exposure to cold , exercise or certain medications, viral infections of the spinal cord (rare) or syringomyelia (rare)

Good luck
14 Comments
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Avatar_n_tn
I'm not a doctor, but I have suffered from BFS for several years.  I have twitching all over as well.  I've been to 3 different neuros in the past several years and I know a little about what they look for.  I can tell you that if you don't have weakness, slurred speech, and problems chewing/swallowing that you're probably alright.  Of course your doctor will be the one to determine that.  Did your neuro run an EMG on you?  If not, maybe you should request one.  BTW, I have had all other weird kinds of things with this as well, such as the "buzzing" feelings and other weird "vibrating" types of sensations.  Certain things also tend to aggravate fasciculations, such as caffeine, alcohol, stress, and being cold. For instance, when I get stress/anxiety real bad, my tongue will twitch like crazy, even to the point to where it interrupts my speech.  Reading about them on the internet will also tend to make them worse!

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Avatar_n_tn
please read my subject just below yours titled { vibrations in lower extremities}. i have a lot of the same symptoms.  all my test came back as normal,which of course im relieved.the vibrations arent causing any pain whatsoever but are annoying. i will say that after 3 months ive gooten used to it and it seems not to be as strong as it was when it started. maybe its just a wierd thing we have that wiil eventually go away. good luck and try not to dwell on it. steve
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Avatar_n_tn
I have had the same symptoms as you all:  buzzing, twitching, numbness, tingling, weakness (or percieved weakness to me), pain in muscles and tendons, burning, aching, etc....  usually seemed worse with lying down or sitting.  I have had all metal removed from my mouth (I had 8 mercury silver fillings and 7 with metal crowns)  I also had 1 root canal pulled and have 1 to go.  I changed my entire diet to vegetables and some chicken.  No pop, caffeine, sugar, wheat, pasteurized dairy.  I take a few supplements like B Complex 100, calcium magnesium, cod liver oil, primrose oil, Vit A and Vit e and vit c (8000-10000 mg day), MSM, and so on .  I do feel much better.  I have to tell you that there is hope and healing for this.  Please search www.mercola.com for info on a great diet to help your body heal.  Tooth Truth by Frank Jerome is a great book to help with mouth toxicity.  Research Lyme disease as well.  What you think you know about Lyme is probably not correct at all unless you have been keeping up on the latest info.  Using Saunas to detox is a great idea as well.  There are lots of things you can do to get rid of these symptoms.  Keep searching and stay as natural as you can.  I have also done Vit c by IV and glutathione.  Research what I tell you.  I stand confidently by it because I have been brought down low by all this and I have lost many a nights sleep worrying about ALS, MS and such.  Many patients that have been diagnosed with ALS and MS have lyme and once the Lyme is killed, the symptoms go away.  Please look into it.  Your probably on the internet a lot anyway looking for answers.  So, just look at it from a different approach.  Instead of needing a name to put with your symptoms, find out what deficiencies cause each symptom you have and correct them.
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Avatar_n_tn
Last but most important, I thank God for healing me like He has.  I did not change my eating and everything else because I wanted to, I tried all I could to get better.  I too felt as if I were going to die really soon and I wanted so desperately to raise my family.  I thank God for helping me find answers and then giving me the strength to do it.  God outlines our diet in the Bible.  Not to sound like a Bible thumper but it is simply the truth and if you are where I was you want the truth and you want it now.  Well, all I have been given I have just given to you.  It's truth and it is life.  Don't give up.  I have a Bachelor's in nursing and though I searched, I could not find the help I needed in my field.  I found it in the Bible and from others that have lived it.
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Avatar_n_tn
Thank you so much all of you for taking your time to comment and help.


all the best
Joso.
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Avatar_n_tn
I also have had many of the symptoms described without any diagnosis.  I am 37 years old and just do not understand what is going on with me and my body.  Besides the twitches that I have throughout my body, I also get a pulling/heavy feeling in my chest, electrical or shooting pains in my feet (mostly my left foot) and sometimes in my fingers.  I have had many tests as well as blood tests taken and all have come back normal.  This is driving me insane!!  I don't know what else to do at this point.  This all started in February of this year as a sore muscle or something like that on my left side of my back right by where your chicken wing is located and not being able to get a full deep breath unless I forced myself to yawn.  Still have to do that sometimes now.  No more back pain though.  I was in good shape when all this started.  Worked out twice a week and was taking Herbalife.  I can be perfectly relaxed watching T.V. and my chest will just squeeze or feel like a pulling and I'll have twitches.  I don't get it!!  But it's driving me nuts.  And, I'm sure my husband is sick of hearing about it!  Any ideas or suggestions?  I have taken some anti-depressants but they make me nauseous.  I've tried magnesium, coral calcium and a few other supplements.  I need an answer.........
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Does anybody know if you do have a specific deficiency like magnesium, how long does it take to take care of the symptom?  I don't know for sure if that is what's causing my twitches, hard to get a deep breath and the pulling feeling I get in my chest but from what I have researched all of these symptoms are in that deficiency.  However, so are many other things.  Also, will all of these symptoms go away or is this something I'm going to have to deal with for the rest of my life?  I guess since the Doctor's have no idea what's going on with me, I'll just try to ignore it as much as I can.
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Thank you for the reply Father McCormack.  I really do appreciate that someone has read my postings.  I may just take you up on the advise to visit a Homeopathic Doctor.  They would probably be able to give me some sort of idea on what to do at this point.  Thanks again.

Amy
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Avatar_n_tn
I also have been on Herbalife for several years - were you taking the green and beige - before it was removed for the ephedra deal?  I still had plently so was still taking it till about a week ago - I just found out I have BFS also and couldn't figure it out because I've been so "healthy"??  I've read some things about caffine and ephedrine and these symptoms - what do you think?
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I was doing the quick start program for about a year and a half.  Have not taken anything since February of this year.  The Total Control, Cell Activator, Multi-Vitamin and 2 shakes a day.  No ephedra in these.  Caffeine, yes.  I have not been diagnosed with BFS but it sure seems that is what it could be.  How long have you had the symptoms and how did they determine that is what you have?  Did you go to a Neurologist?  Will the symptoms go away?  Did they give you any type of medication?  What symptoms do you have exactly?  How long have you had them?  Do you have them everyday? I really don't think that the Herbalife is the cause.  Do you?  Although it is strange that we have both taken Herbalife and have these weird symptoms.
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Been on Herbalife for 4-5 years - I still love the products and stop occasionally to see if the symptoms go away - and they don't. Been to a neurologist and diagnosed - nothing you can do (he says).  It seems like the symptoms started about 2 years ago and slowly got worse - yes now every day - I do exercise (jog) and have cut back on that to see if there is any difference - I can run a couple days and then have to take off a couple days. If I'm standing for what now seems a long time(3-4 hours - cooking Thanksgiving dinner) legs ache.  The main symptoms are involuntary movement in my legs (and occasionly arms now) it almost feels and looks like worms moving around - and I'm not a bug person - but have gotten used to it. And yes, everyday - somedays better than others.  The nerologist says nothing you can do - but I haven't given up and I'm still looking and will continue to do so. The neurologist says he has it and has diagnosed several doctors with it.  The doctors get nervous as the symtoms (symptoms) are similar to ALS he said. At least getting ALS ruled out, along with neuropathy, and parkinsons - is a relief. If you find or hear of anything let me know - I'm more verred to the natural health than the medical field for treatment.
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Avatar_n_tn
Sorry it's taken so long to reply.  So, you were saying that the neurologist has the same thing (BFS)?  That seems kind of strange.  What does he do to relieve the symptoms?  Or, do he just deal with it since there is nothing that can be done?  I'm not sure that I have BFS.  I have for the last 3 days had all the symptoms and it's driving me crazy.  It did seem that I was getting better.  It was as if I could go for a week without anything and then out of the blue I wake up and have the twitchy stuff and the pressure in my chest.  I have also noticed that I seem to slouch a lot.  I try to catch it and straighten up.  Have no idea why I do that either.  It seems that I need to have someone push on my shoulders to relieve the pressure in my chest or maybe it's contraction of the muscles, I don't know.  You don't have any of these symptoms, do you?  I was taking liquid magnesium capsules and that might have been what was making me feel better.  I just stopped about a week or two ago.  I guess I'll start them again.  I still don't know what to do though.  All the doctors I've been to don't know anything.  So, what do you do at this point?  My eye twitches too and it drives me nuts!!  I just want to punch myself in the eye to see if it will stop.  Sounds like I'm a mad women.  Do you think that this could be Thyroid related?  Everything I mention to the doctors they say no but there is something causing this.  I want to know what it is and how to fix it for crying out loud.  Do this bother you like it does me?  What does your family say or your husband, if you're married?  Are you taking any anti-depressent to deal with it better?  I really hate medications because they are not good for you and highly toxic.  Plus they just give you other symptoms or problems.  But, I need something before I go out of my mind!  I wish we could figure out what to do.  Anyway, try liquid magnesium and see what it does for you.  It will take some time for it to get into your system though.  Let me know how you are doing.

Amy
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Hey Amy - I don't have the chest pressure that you have. I don't take any prescriptions drugs. In lieu of anti-deptessanta I take Sam-e and have been taking for years (thru Life Extentions.org). The doc said nothing you can do - One doc said I had hyperthyroid and was quite eager to to a biopsy - I was not as eager and didn't opts for that. Supposed to get another scan to see if any changes. Don't know if it is related at all.
Hy husband says "when you get older, things don't work the same" - I'm 54 (so I don't agree with that one either).  I'll give the liquid magnesium a try (apprecite the tip).  If anyone else has ideas - I'd like to hear them!  In January I think I'll do a 5 day juice fast - see if that helps!  I've done other cleanses but could never get myself to do that one - I'm ready this time.  I'm not accepting this as "nothing you can do" - I'm not giving up! Yes it drives me nuts - but that won't help either. Thanks AMy - let me know how you're doing!
KRP
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