Twitching and terrifed - Neurology

by Maureen, Sep 12, 2000 12:00AM

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

by Maureen..A question, Sep 13, 2000 12:00AM

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?

by Karen, Sep 14, 2000 12:00AM

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

by Maureen..A question, Sep 14, 2000 12:00AM

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.

by Julie, Sep 14, 2000 12:00AM

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.

by Dale, Sep 15, 2000 12:00AM

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.

by Karen : is julie there?, Sep 15, 2000 12:00AM

julie, have you been diagnosed with ALS?
Karen

by Kimberly, Sep 15, 2000 12:00AM

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.

by Laurell, Sep 15, 2000 12:00AM

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.

by Maureen..A question, Sep 15, 2000 12:00AM

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?

by Karen, Sep 16, 2000 12:00AM

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

by Karen..To Lauren, Sep 16, 2000 12:00AM

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

by Karen..To Lauren, Sep 16, 2000 12:00AM

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

by Maureen..A question, Sep 16, 2000 12:00AM

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

by Kimberly- To Laurell, Sep 16, 2000 12:00AM

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.

by skipatro, Sep 16, 2000 12:00AM

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.

by contessa, Sep 16, 2000 12:00AM

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.

by Kimberly- To Laurell, Sep 16, 2000 12:00AM

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!

by Rahul, Sep 18, 2000 12:00AM

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 ***@****

by skipatro, Sep 20, 2000 12:00AM

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....

by skipatro, Sep 20, 2000 12:00AM

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....

by Maureen..A question, Sep 21, 2000 12:00AM

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.

by john halder, Sep 26, 2000 12:00AM

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..

by skipatro, Sep 26, 2000 12:00AM

I know the neuros don't take many extra questions in the forum due to cost, but after reading so many of these posts about benign fasiculations it seems like a few questions could be asked for the group of twitchers and maybe resolve some of the questions for us. Do BENIGN fasciculations make a person's legs or arms feel fatigued, not necessarily weak - I think I could walk around the zoo, etc... but would just feel really tired out signify something different than say someone who cannot hold a glass or push the gas pedal on the car? How do the neurologists determine what is "weakness" and what is due to probably overreacting muscles to all this twitching. My legs feel tired all the time and I see a specialist in two months, but I am still really worried. The second question is, do most of you twitchers feel a generalized fatigue, like you just don't feel right? Thank you for your responses and best wishes to all...

by Karen..To Lauren, Sep 27, 2000 12:00AM

Sometimes when I lift my arms say to do my teeth or hang out the washing they feel really tired and weak like I can't lift them, as do my legs sometimes. One week I might be fine the next I feel like I'm battling to stand for 5 minutes on my feet! I think to determine true weakness and not just a weakness that you perceive the neurologist runs tests on your muscles and nerves such as an EMG which will show up abnormal if there is true weakness there. One day my arms felt exactly like I described above, like I couldn't lift them but when I went to an appointment at the the neurologists that same day he did an EMG which was normal and performed tests on me such as getting me to push and pull etc. against his hands and there was no difference in the strength of both sides despite the feeling of weakness I had. I'm suffering alot from fatigue too since this muscle twitching started and I really hope I don't get stuck with a diagnosis of chronic fatigue syndrome for lack of them not being able to find anything else because I think that's just a convenient label they give you when they don't know why someone's feeling like ****, it's so generalised, not that I doubt that people that are diagnosed with CFS feel terrible. I'm just going to start exercising more. If I'm going to have twitching, aching and tired muscles it may as well be warrented.
Karen.

by skipatro, Sep 28, 2000 12:00AM

Thank you for your reassuring reply. Sounds very similar to my situation. If you would like to correspond with me my e-mail address is ***@****

I would like to keep in contact with as may folks as want to because I feel it helps me and keeps my fears somewhat in control. I have a followup appointment today with my neurologist. Hopefully he will give me some good news.

by Karen..To Lauren, Sep 28, 2000 12:00AM

Maureen, how long did you have tingling for? My left hand is driving me crazy buzzing especially after I've done something really active. Karen

by Karen..To Lauren, Sep 28, 2000 12:00AM

After reading some of the other entries below I thought I'd add this, I had a positive blood test for parvo virus in December (The virus was still active) just before all this started but the doctor said that fifths disease is mild and your body should shake it off in a few weeks, explaining that kids get over it in days, is this right?
Karen

by Mitch, Oct 05, 2000 12:00AM

I GET THESE STRANGE ACHES ALL OVER MY BODY THAT SOMETIMES TURN INTO STABBING PAINS, GNAWING PAINS, OR BURNING PAINS. I GET THEM EVERYWHERE, IN MY STOMACH, BALLS, LOWER ABDOMEN, BACK, ALL OVER... IT STARTED WITH CHEST PAIN, THEN PAIN IN MY LEFT ARM. THEN I HAD HORRIBLE HEADACHES ON THE TOP OF MY HEAD THAT WERE SO SEVERE THAT I WOULDN'T EVEN CLASSIFY THEM AS A HEADACHE. MORE LIKE STABBING PAINS. THEN MY TOE STARTED TWITCHING FOR A FEW DAYS. NOW I HAVE THESE "FASICULATIONS" ALL OVER MY BODY AND ATTACK ME CONSISTANTLY THROUGHOUT THE DAY. THEY HIT ME IN THE BUTTOCKS, STOMACH, NECK, FACE, BACK, FEET, HANDS, ARMS, BICEPS, ETC. IT'S A REAL PAIN IN THE BUTT. I THINK I'D BE ABLE TO DEAL WITH IT BETTER IF I DIDN'T HAVE ALL THESE OTHER STRANGE PAINS ALL OVER. SOMETIMES MY HANDS HURT, THEN MY RIBS HURT, THEN MY BACK HURTS. LATELY MY TESTICLES HAVE BEEN HURTING. MY INTERNIST IS PUZZLED. NEUROLOGIST DISMISSED ME AS HAVING NOTHING NEUROLOGICAL AFTER BRAIN MRI. NOW SEEING RHEUMOTOLOGIST TO SEE WHAT SHE CAN FIND. I'M 25 AND ALWAYS HAVE BEEN HEALTHY BEFORE THIS SUMMER. NOW, I'M ON CELEXA AND KLONOPIN TO KEEP MYSELF FROM HAVING PANIC ATTACKS. I'VE HAD MANY SO FAR!!! IT SEEMS LIKE SOMEONE SNUCK INTO MY BODY AND JUST STARTED PLAYING AROUND WITH MY ORGANS. HOW CAN THE DOCTORS NOT KNOW WHY I TWITCH AND WHY MY MUSCLES JUMP? I HAVE NO STRESS BESIDES THESE PROBLEMS. I BET IF I WAS A CELEBRITY OR RICH THEY WOULD HAVE FIGURED OUT THE PROBLEM BY NOW, BUT BECAUSE I'M NOT, I HAVE TO GO WEEK TO WEEK WITH WAITING TO SEE THE NEXT DR. HOPE I MAKE IT, MITCH ***@****

by Patti Q, Oct 17, 2000 12:00AM

When I first became ill w/ Chronic Fatigue Syndrome, I was experiencing mono-like symptoms. One of the symptoms was also that my legs would twitch and lead up to my whole body shaking. I was experiencing nervous and physical exhaustion at the time. 15 years later, the CFS eventually went into a diagnosis of Fibromyalgia. I still have the symptom of muscle twitching from overuse and from not resting. I am also scheduled for an appointment at John Hopkins to rule out chiara malformation. I have pain at the base of my skull and it seems to interfere w/ my walking when the pressure is too great. I have a myriad of symptoms but these are what you are discussing here. At one point, before diagnosis w/ CFS, my legs literally would not move when I was shopping. Now, I think whether I can walk the mall that day before I attempt it or just stay in one store pushing a cart. It became a way of life for me. MS was ruled out twice. I am back working p/t and going to school at night, off of disability. I do what I can and the people at work and school accomodate me if I need them to. But, I will not give up in my search for freedom from this pain. I had the symptom of muscle twitching and reported it to my muscle therapist before they became aware of it as a part of fibromyalgia.

by From Kay to Karen � Laurell, Oct 19, 2000 12:00AM

I have been having fasciculations for a month now, and my symptoms are the same as yours. Muscle aches in the arms and legs one day, and then fine the next. I couldn't even use the blow dryer to dry my hair the other day. Then I was fine for a few days, now my thighs feel tight and jumpy. Most of my regular twitching is in the calf area on both legs, with some tingling sometimes. Lately, I wake up about 5:00 am and worry. Then my legs feel achy and twitchy, and I am such a wreck that I am awake for the rest of the day worrying. When I walk and THINK about my legs, they feel rubbery and unsteady. But I work all day and when I DON'T think about them, I am FINE!!! I am having that extra glass of wine in the evening to calm me down. Either the twitching goes away or I don't think about it when I have a drink. I also sometimes take valium or diazepam to calm myself. I wonder if this can make it worse. Also, I have been on estrogen for 4 years....

by skipatro, Oct 19, 2000 12:00AM

You sound like so many of us! I recently went on Clonezepam to help with my anxiety and the feeling of my muscles always tremoring and twitching. It has helped. I too am terrified of my symptoms. I am having little cramps in my legs all day today - so it just keeps reminding me and makes it that much harder to forget about it. I think you may find some help from a web page that has many, many other people with the same problem - Please check out: The Neurology Web Forums at Massachusetts General Hospital and go under the neuromuscular forum. It may help to ease your mind to find out that there are so many other people with this same problem. Feel free to keep in touch with me if you need an ear to listen or are afraid, my e-mail address is ***@****. God bless and try not to worry.

by Kay, Oct 19, 2000 12:00AM

Many thanks for your reassurance!!! I was hoping to hear from someone as this is my first time on this web. I twitched ALL day today in my legs especially, but I also have had some numbness in the left side of my tongue on and off for 3 weeks. NO slurring, swallowing or speech difficulties or any weakness anywhere, and today I had tingling in my feet. (I had this about 5 years ago and it went away after I was checked out by a neuro). I know that it is all anxiety. I am a TOTALLY type A hard worker and am very stressed out lately. Now my two middle fingers on my left hand are jerking....The regular twitching has been going on for a month. It started in my calves, and has moved around alot. My legs are SO twitchy that it has turned into an all over tingling!!! My father-in-law died of ALS 5 years ago, and it still haunts me. I am very aware of all of the symptoms, tho I don't think that the tingling and numbness in the feet is not typical of ALS. I am going to try and get up my nerve to see a doctor next week. But I think that the longer I hold out without ANY weakness, the better off I am.....I also grind my teeth at night terribly, am on Fosamax and Estrogen!

by Kay to Laurell, Oct 19, 2000 12:00AM

Many thanks for your reply. I am going to go on that web right away. I posted a very long message this afternoon that never got posted...I twitched all day, with numbness in my tongue, feet, and spasms in my fingers! I went out to dinner, had two glasses of wine, and of course feel better, but STILL feel the twitching in my legs. It is non stop. I have been taking valium, and someone has said that it may be the problem! I also am on estrogen and fosamax!

by Kay to Laurell, Oct 20, 2000 12:00AM

Many thanks for the Mass General Website!! We truly are not alone or going crazy. It is a great comfort to me to know that SO many people have the smae symptoms. I hate to think that I have only been going through this for a month and that it could go on for years...did you read the postings about Gatorade???? I was on that Sugar Busters diet, and I have not had a banana for about a YEAR. I can't believe it is potassium imbalance. I also suffer from General Anxiety Disorder so that accounts for alot of this. Also, Calcium imbalance causes fasciculations. I am looking for a cause for this all day long, and can barely get my work done....

by lisa, Oct 26, 2000 12:00AM

HI-I AM A REGISTRED NURSE WHO BEGAN TWITCHING ABOUT 5 MONTHS AGO AFTER A VIRUS AND A ROUND OF ANTIBIOTICS FOR A UTI-I FOUND THE EARLIER POST INTERESTING RE: THE POSS LINK BETWEEN CIPRO PRIOR TO TWITCHING. THE PAST 2 MONTHS MY TWITCHES ALMOST DIMINISHED COMPLETELY. THOUGH AFTER A RECENT ROUND OF ANTIBITICS AGAIN 2 WEEKS AGO FOR ANOTHER UTI, I HAVE BEEN TWITCHING QUITE SEVERELY AGAIN AND IT IS DRIVING ME NUTS FROM HEAD TO TOE, SOMETIMES PRETTY DEEP MUSLCE TWITCHES. I DO HOWEVER TAKE NEURONTIN WHICH HAS DONE WONDERS FOR ME. MY NEURO ALSO SPEAKS VERY HIGHLY OF IT.
I KNOW THIS WHOLE THING CAN DRIVE YOU CRAZY SOMETIMES.

by Desiree, Oct 26, 2000 12:00AM

I was on several antibiotics & do believe twitches started after or inbetween them. Cipro was one of them.It has been about 4 to 5 months sporadically in wrist & anywhere. Have not noticed in face.

by candace, Oct 28, 2000 12:00AM

I'm an 18 year old female and for about 6 months now I've been twitching. It's getting worse and worse as time progresses. I twitch everywhere: nose, palms,feet,legs,toes,abdomen,thighs,buttox, fingers,shoulders,back,side,eyes,lips--everywhere. Sometimes I feel like I'm going crazy. And when I am alone, I just cry. I feel like my body is in constant motion. It feels like the blood is not following properly. In addition, I have "spasms". My hands also shake and I get headaches regularly. I cannot stand still. I cannot lie still and therefore it's very hard for me to fall asleep at night and being asleep is the only thing I want to do. Nintey percent of my thoughts each day is focused on my "condition". I cannot concentrate in school. Sometimes, because of the shaking, it's too difficult for me to type in my Word Processing Course and I frequently find myself concentrating on the speed of my twitching instead of what is being taught in class. I've been to my doctor. She took a blood test where she looked @ my hemoglobin and tested me for diabetes. A week later, she told me there was nothing medically wrong and refered me to a counsellor. I'm not satisfied with what she's told me. I feel disgusted with myself. My self-esteem is too low for me to live like a regular teenager. I don't want to die, but I don't want to live. I'm glad I found this forum because I really needed a place to vent. No one understands me, and it seems like no one cares. Can anyone tell me if the twitching will ever stop? Can anyone tell me of any chatrooms I can go to. I really need someone to talk to.

p.s I still thank GOD that I am alive.

by bill, Oct 29, 2000 12:00AM

Karen,

I have been twitching for the last 3 years and was pretty much in the same mental state as you for the first year. I just wanted to share some of my doctors words with you to give you some piece of mind. He said that als would show up immediatly after twitching began and that it is so progresive in nature that weakness would set in very shortly after and by the sound of your post it has been a while since you fasciculations have started and you don't have any weakness. Try to settle yourself, I know that is easy to say but from experience I can tell you that it gets a whole lot better once you can get yourself to believe that you are not dying. My twitching comes back on and off now and seems to coincide with stress but it does not bother me so bad anymore because I simple do not believe that it is the end of my life. I hope this helps.

bill

by lisa, Nov 01, 2000 12:00AM

I AM A REGISTERED NURSE IN THE SAME BOAT AS ALL OF YOU AND FIND THIS ALL VERY FRUSTRATING. I TO HAVE HAD 2 NEG EMG'S, MRI, AND CONTINUE TO HAVE BODY TWITCHES EVERYWHERE. JUST WHEN I THOUGHT THEY HAD SUBSIDED, AFTER 2 MONTHS OF MINIMAL TWITCHING, THEY CAME BACK FULL BLAST AFTER A BOUT OF BEING ON ANTIBITICS FOR 3 WEEKS, WHICH I DO NOT KNOW IF THIS A COINCIDENCE, BUT WHEN THEY FIRST STARTED, I WAS ON ANTIBITICS SHORTLY BEFORE,TOO, AND YES ONE WAS CIPRO. WHETHER THIS WAS DUE TO THE EXTREME STRESS AT THE TIME, THE HIGH CAFFEINE INTAKE, THE SEVERAL VIRUSES I HAD PRECCEDING THESE AWFUL TWITCHES, I GUESS I WILL NEVER KNOW, BUT 5 MONTHS LATER I AM STILL TWITCHING AND BUZZING LIKE CRAZY. TRUST ME, AS A HEALTH CARE PROFESSIONAL I WAS JUST AS FREAKED AS EVERYONE ELSE, AND AFTER MUCH RESEARCH HAVE DECIDED TO TRY AND PUT THIS BEHIND ME. NEUROS SAY EXTREMELY SENSITIVE HYPERACTIVE NERVOUS SYSTEM, POSSIBLY TRIGGERED BY ALL OF THE ABOVE, AND FOR NOW I GUESS I CAN LIVE WITH THIS. GOOD LUCK TO ALL.