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Twitching and terrifed

I've been twitching all over now for about 11 months. Sometimes you can see the skin move, like in my hands, feet and face. It started december 99' last year, now being september 13 2000. Since it started I've had an MRI of the head and spine 3 emgs and nerve conduction studies - one performed by a different neuro (second opinion). My last emg and NCS was 3 weeks ago. Every test has come back normal, including physical examinations by the two neurologists. Both said BFS. I don't have any weakness. My neurologist is very well re-spected and I don't have any wish to see another one but it's not getting any better and I'm just terrified that I have ALS. I'm 31 years old with a husband and a 2 year old daugther that I absolutely adore and the thought of maybe having ALS and thus not being able to see her grow up is breaking my heart, I'm getting to the stage where I'm crying alot, thinking that I've only got so much time left. I know this sounds completely melo-dramatic but If it was just me I had to worry about then it would be a different story, I probably wouldn't care. I just really need some answers because I feel like my life has stopped due to fear of this disease. As I said before I really respect my neurologist but I don't feel comfortable asking him lots of questions. How long after twitching starts does it take to show up on an EMG if you have ALS? Please help.
                   Karen
63 Responses
Avatar universal
Dear Karen:

I am sorry that your having these fasciculations.  Without muscle weakness being demonstrated on neurological exam, a normal needle EMG exam, you do not have ALS.  The muscle becomes dead in ALS and the EMG picks up fasciculations and fibrillations.  A normal EMG tell you that the muscle is not dead.  Once ALS is diagnosed, the average lifespan is disappointly short, 3-5 years.  There would have to be ongoing disease of some time (5-10 months) before one sees obvious fascicualtions and therefore by now, you would have epxressed the neurological exam findings of profound muscle weakness.

So, again, I do not think you have ALS, nor have we seen anyone with fasciculations and a normal EMG needle exam develop ALS.  

Benign fasciculations are really bothersome and cause a great deal of anxiety (which makes them worse, by the way).  We are really unsure of the etiology of these but some patients report a preceding viral illness.  They eventually go away on their own (I have them occasionally so I can tell you how frustrating they can be and be creditable).

I hope I have eased you mind alittle.

Sincerely,

CCF Neuro MD
Avatar universal
Hi Karen, I just wanted to write to you to let you know that you are not alone.  I had an episode 11 months ago that started off with a little tingling feeling in my left leg, which then turned into a severe anxiety attack because I thought the tingling was lyme disease, which then turned into tingling all over my body!  Face, legs, arms, feet, and hands.  I tested negative for lyme disease, and then thought I had MS.  When I wholeheartedly 100% in my mind thought that I had MS, I was a complete wreck.  At the time I had a 15 month old and a four month old that I could hardly take care of.  All I did was cry, I could think of NOTHING but having MS.  Well a little while after the tingling set in, the muscle twitches started.  ALS crossed my mind as well, But I really thought it was MS.

I started going to nuerologists, they would give me the basic in office tests like making me walk a straight line, looking in my eyes, and poking me with needles to see if I felt lessened sensation in any part of my body.  Well the doctors I saw wouldn't even give me the big tests, they automatically dimissed me, and told me that I had anxiety and depression.  I knew that I had a huge anxiety attack when all of these symptoms popped up, but I just couldn't except that there was nothing wrong with me.  Eventually I got one nuero to give me an MRI of the brain, and that came out negative.  Although I am very happy that it was negative, I know that an MRI alone does not rule out MS.  But my husband was convinced there was nothing wrong with me, and I was driving him crazy.  Even my mother who has always been there for me no matter what thought that I was being ridiculous.  So I gave up my search.

A year later the only symptom I still have on a consistant basis are the muscle twitches.  I get them all the time, they mostly happen on my legs, and my face.  I have no muscle weakness, that I know of.  I, like you have no idea what is wrong with me.  I still think I have MS sometimes, but I try not to let it rule my life.  I am not a doctor whatsoever, and I don't even know you, but I honestly don't think you have ALS.  I definetly think that you would have muscle weakness if you had ALS, and I don't think your ONLY symptom would be muscle twitches.  It's a scary place to be when you have strange things going on with your body, I know this first hand.  But we have to try our hardest to go on, and not let it rule our lives.  When I think of the misery I lived from October'99 to December'99 I literally get scared inside, and I never ever want to be there again.

I don't think you have ALS, and I don't know if I have MS.  But I know that we both have families, and we can't live our lives worrying all the time, and thinking of nothing else.  Because we're not really living when all we can do is obsess over our health.  All those tests you got are such a good sign.  I only got one test, which doesn't tell me much as far as having MS or not, but I'm very thankful that I don't have lesions on my brain.  Who knows the lesions could be on my spinal cord, no one checked there.  But I can't be miserable again like last year.  I'm actually thankful that all I get now are muscle twitches.  That tingling was horrifying.

Hang in there, and be happy that all those tests came out normal, and that you DON'T have ALS.  If you want to talk to me further about our muscle twitches, and undiagnosed health problems, you can e-mail me at ***@****  Sorry this was so long, I just really feel for you, and know the fear your living in.

Maureen
Avatar universal
Karen, I forgot to ask you in my last post, can you remember anything out of the ordinary happening to you at the onset of the muscle twitches?
Avatar universal
The first thing that happened just before the twitching started was feelings of being burnt all over my body, eg. for about a minute the top of my head felt like really hot water had been poured on it or a patch on my arm or somewhere else on my body felt burnt for aminute or so, this really scared me at first but I've just got used to it now. It all had a very sudden onset. This sensation still comes and goes. The last couple of months, mainly the left side of my body I'm having tingling, prickling in my hands and feet and the burning has returned too. I guess MS has gone through my head a fair bit but If I had that I could cope with it, at least you probably have periods where you go through remission and there seem to be drugs out there that can control it to some extent, unlike motor neuron disease. I've got a bad tremor in my left hand at the moment, still scared, but thanks heaps for your reassurance , hope you're feeIing better and I'll email soon. Karen
Avatar universal
Karen, one more thing to help ease your mind.  In your above post, you mentioned having tingling, well from everything that I've heard and read about ALS, you never experiance tingling if you have it.  Even one of the nuerologists that I saw when I thought I had MS told me when I asked him if there was any chance I could have ALS that there is no tingling involved in ALS.  He is a very good nuero to, from Ireland.

I know you don't have ALS Karen.  Like CCF nuero said, you would have profound weakness at this point if you had ALS.  Please try to tell yourself that you don't have it, because I just know you don't.  I read a lot about it when I thought I had MS to see if there was a possibility that it was what I had, and from all of the symptoms that you mentioned it seems it would be impossible for you to have it.  I've had muscle twitches also for almost a year, and I'm as strong as I've always been.

One more thing, remember that our mind can play SERIOUS games on us.  When I thought that I definetly had MS, I actually thought that I couldn't walk right, and I thought I was slurring my words when I talked.  But then I realized that when I wasn't thinking about MS, I was walking and talking perfectly normal.  The tingling that I used to get is pretty much gone,(knock on wood) But I still have muscle twitches.  I have no idea why I have the muscle twitches, but I really have to try not to think it's MS.

Good luck, and I hope to hear from you soon.  Remember, there is NO tingling in ALS.
Avatar universal
You don't have ALS.  Count your many blessings that you don't have any weakness.  I have three darling kids - 6, 3, and one and am having definite bulbar symptoms- slurred speech and swallowing.  I'm only 31 and my heart is completely broken.  If you are just twitching you are fine.  I know how it feels to be where you are with thinking about the kids and not seeing them grow up.  It really helps to go on medications for this...like prozac.  I found that the meds help me cope with the situation better.
Avatar universal
I have had many of the symptoms you have described and received the same <it must be benign fasciculations> diagnosis. I wasn't satisfied with that so did some self-evaluation which focused on my diet. After removing caffeine, alcohol, and a few other things my twitching and numbness stopped completely after only 3 days. If I eat the wrong thing they come back within 12 hours and last for 6 hours or so. Maybe this is something for you to look at. And it isn't always the obvious foods. Parmesan cheese is one of the worst triggers for me! If you can, do a four day fast and see how you feel, and then reintroduce different foods slowly. Maybe this will help.
Avatar universal
julie, have you been diagnosed with ALS?
        Karen
Avatar universal
To Karen:I have also had twitching throughout my body for 2 years. It brings on so much anxiety.  I have a five month old and the fear of ALS drives me crazy.  My husband is tired of hearing about it, but every time I have a fasciculation, I can't help but think the worst.  I don't think that I have muscle weakness but I definitely have muscle aches - especially in my legs. I've been to a neurologist several times and he says benign fasiculations and did not even recommend an EMG.
It helps to know that I'm not the only one with this issue.
Avatar universal
Another muscle twitcher here - scared to death.  I guess my question for the other people who have this is - does it seem to you that after a day of twitching like in your legs, that your legs feel "different" not necessary weak but more like tired.  I think all the twitches in my legs are making them feel fatigued.  I can still walk fine, lift things with my arms, etc... I am not sure if this is considered "weakness" or just another part of the twiching.  Any comments would be greatly appreciated.
Avatar universal
Hi, I just wanted to write back and tell you that when I get the twitching, that's all I get is twitching, no diffrent feeling in any parts of my body where it is occuring.  But when I get tingling, I notice that when the tingling goes away, my muscles feel a little sore.  I haven't gotten tingling in awhile (knock on wood), and my twitches come and go, but don't seem to leave behind anything when they go.

strange thing this is huh?
Avatar universal
Earlier on in the year I when a part of my body twitched, say my calf muscle for instance, about a few hours later I would have terrible muscle pain in that area that would last for a day or so, you couldn't even touch the muscle, there was one time there in April I'd had it in the legs for a couple of days and a short time later my left leg felt weak like it was going to buckle underneath me, I remember it pretty clearly, where I was at the time and everything. I was convinced that I would be in a wheelchair or something by the following week, but no, it just waxed and waned and was better by the following week, then it would be my wrists or upper arms twitching, again followed shortly by muscle pain and I'll say 'perceived' weakness in my right arm, as when I had my right arm and left leg checked out by EMG and nerve conduction studies about 8 weeks later (about july) everything was normal as per usual. I've had these tests repeated months later by two different neurologists. The twitching is still the same as ever but I seem to be going for days at a time now without muscle pain which is a relief because I'm sick of hot baths. I think If I'd never heard of ALS all this **** would be over, like Maureen said it's really scary what your mind can do. I was in a terrible state about all this in Febuary and I swear I felt I couldn't swallow or chew properly, my jaw bones ached and I had twitching and spasming in my face and neck. It's fine now though. I don't know what's going on!
   Karen
Avatar universal
I suppose it's only logical that if your muscles have been twitching or spasming in a certain area then that area is bound to feel tired, weak or sore just like it would if you'd had a work out. My legs and arms have felt like that plenty of times after twitching but they get better.
Karen
Avatar universal
I suppose it's only logical that if your muscles have been twitching or spasming in a certain area then that area is bound to feel tired, weak or sore just like it would if you'd had a work out. My legs and arms have felt like that plenty of times after twitching but they get better.
Karen
Avatar universal
Laurell,
Sometimes after my legs have been twitching they feel achy- almost flu-like.  In the past, my legs did not twitch that much.
It seems like only recently that they have twitched a lot.  I walk every day - about 2 1/2 miles and they feel fine.  However, when I wake up in the morning my feet and ankles are a little sore. Where exactly are your twitches? Only in your legs?
I had a baby 5 monthes ago and it seems that since then the twitches have gotten worse.  I too feel that if I never heard of ALS then these twitches would not be so bothersome. I hope your twitching gets better.  I have my good days and bad.
Avatar universal
Hi again, you mentioned in your post to Laurell that you think that if you never heard of ALS, all of your problems would be over.  Well I just wanted to tell you that all of my symptoms started popping up AFTER I read about MS.  I had a strange feeling in my left leg, and then I started looking up symptoms on the internet.  I first thought I had lyme disease, but when I found out I didn't I had my mind made up that I had MS.  I would read about having diffuculty walking, and I thought I wasn't walking right, then I thought I couldn't swallow right, and I thought I was slurring my speech.  I'm embaressed to even mention this, but I was so obsessed that I would even give my self tests at home, that the nueros gave me at my appointments, like standing with my feet together and my eyes closed to see if I would sway to the side, and I always thought that I was dizzy when I did it.  I would also put my chin to my chest, to see if I got that zapping sensation in my body.  I even went as far as running an object down the bottom of my foot to see if my toes would go down!!  Talk about obsessed.

I don't know what I have, but I know that you DO NOT have ALS.  Please keep trying to tell yourself that, because I would hate to think that your living the nightmare I went through last year.  Like I said before, you can e-mail me anytime, and I will keep reminding you that you don't have it.

Maureen
Avatar universal
Thank you so much for all your responses!  It sure helps to ease my mind.  I too tend to focus on things like am I really having difficulty swallowing or am I just making more spit because I am a nervous/anxious wreck!  HA!  My twitches are everywhere too.  Also sort of a shakiness or "buzzing" feeling in my muscles after I overuse them.  Maybe I am just out of shape on top of everything else - it is almost like when you overexercise and then you get shakiness in your muscles.  The one thing I have noticed is that alcohol (which I have used to calm myself lately once and while - and who could blame me right?) will make them almost completely disappear.  I don't know what that part of it means (I know that if I would turn out to have ALS I would probably become a raging alcoholic!)  I will pray for each and every one of you that you as well as I find out what this crazy thing is and that it goes away soon.  I am glad to have a place to talk to people about it.
Avatar universal
Sometimes EMG's are normal in the early stages of Peripheral Neuropathy.  Request a QST test perhaps.  It uses no needles and is easy and painless.  It may take many years for a chronic PN to show up especially if it waxes and wanes. Just a possibility and this has been my experience. I have a PN, mild really compared to what it can be. Also a Myopathy is questioned but I've been at it for years.  Don't happen to have Restless Leg Syndrome do you?  These can go together but it may take a long time for any real damage to nerves to show up.
Avatar universal
Laurell, Your symptoms sound a lot like mine.  I too have a glass of wine at night and this seems to help.  It definitely calms my nerves.  I just don't want this to become a habit.  Have a great weekend!
Avatar universal
hi
i am rahul from india.i have benign fasciculation from last three years.my fasciculation started in  june 1996 and from then i have it . i don't think u have ALS so let that so let that  fear go of ur mind.The neuro say bye the time u have fasciculation ur EMG examination should not be normal.Right now ur fasciculation must be pretty intense but by the course of time it will become more suptle. I know u like other twichers would be interested in knowing the definitive cause of it .SO relax u have benign fasciculation .I have to say u something this is apart from any neuro stuff. may i know ur date of birth and do mail me if ur date of birth is  either    4,13,22,31 of any month according to numerology people born on these dates suffer from mysterious ailments difficult of ordinary diagonosis.as well as u can try holistic healing like reiki.check ur horoscope according to hindu
system and wear gemstone suggested.see i am telling u all this and u may feel it is just a piece of scrape but belief me the neuro's won't be able to help u.take care
my email id ***@****
Avatar universal
On doing some research on this twitching thing, I found a site where people were talking about recently having taken Cipro- an antibiotic and then developing twitching.  I was just curious if any other twitchers out there have taken this recently.  I did and I am curious if there could be a connection there....
Avatar universal
On doing some research on this twitching thing, I found a site where people were talking about recently having taken Cipro- an antibiotic and then developing twitching.  I was just curious if any other twitchers out there have taken this recently.  I did and I am curious if there could be a connection there....
Avatar universal
Hi, I had to take Cipro two months before the twitching started.  But do you think if it was from the cipro it would just come and go, or could it last this long, almost a year?  Could you give me the web address to this site your referring to?  I'd like to check it out.  Thank you.  My e-mail address is ***@**** if any one ever wants to talk about this.
Avatar universal
this is just too amazing..these doctors hate to admit that one of the main causes of twitching is ..for a good examle..my case for instance..my entire body started twitching after i stopped taking ativan..lorazepam)  dont ever injest this ****..i went thru hellu worrying..the reason youre twitching stops after you have a drink is because its a cns suppressant..
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