Twitching and terrifed

[Karen]

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

[Rahul Sharma]

try homeopathy it is helping me.
any queries mailme at ***@****

[Caden]

I have been diagnosed w/ BFS.  I have twitches all over.  Also have small local pains in muscles that go away in a few seconds, and sensations that a cramp is coming on, but no cramp does.  My neuro is baffled by the fact that my CPK is elevated.  Does anyone else out there know if CPK can be elevated in BFS or Cramp fasciculation syndrome?  

Caden

[Sean]

I am from the MGH Neuromuscular forum.  You should definitately swing by, I think you will be relieved to find so many that share your symptoms.  I have been twitching, tremoring, buzzing etc. for nine moths and went through severe anxiety in the beginning.  Luckily I was able to get it under control after taking Paxil and am now about 90% back to my old self.  The forums and the passage of time also contributed to regaining my sanity.

[Twitching:Cipro. Levaquin, FLoxin, Avelo]

Indeed all fluoroquinolone antibiotics can cause twitching,as those of is who have suffered adverse effects can attest. And yes, these twitches can be long-lasting. for more information on the adverse effects these drugs cause, go to http://www.geocities.com/quinolones and read either the adverse effects or the member forum.
i had a severe adverse reaction to Levaquin and muscle twitching was a part of it, not well-documented yet in the medical literature, but high time it was!!!
best of luck to all of you:
Linda

[tori]

Like the rest of you, I've been putting up with the "twitches" (and spasms)for awhile...since spring of '96.  Am very glad I didn't know about the symptoms of ALS when my Dr. sent me to a neurologist.  His diagnosis was BFS, which he said he also had, so I figured he must be right.  He also said there was no known cause or cure but told me to reduce stress and stressors, such as caffeine.  
   I used to drink at least one diet pop per day and used nutrasweet several times per day.  Then I read about the neuro symptoms and decided to stop consuming it.  WOW, what a difference!   For several months I didn't twitch, but then it slowly started again but it's not as bad as before.  
   Since then, I started getting treatments from an accupuncturist.  The treatments aren't much fun (I'm very sensitive) but they have helped.  They also relieved the extreme itching that I sometimes got on my feet (no rash or other symptoms). I went the nontraditional medical route because I didn't want to end up taking a bunch of drugs that could then cause other problems.
    Learning to take life, work, etc, a little less seriously, remembering to look on the bright side of things, and prayer have all helped, as well. Good luck to all fellow "twitchers" and get off aspertame!

[tori]

Like the rest of you, I've been putting up with the "twitches" (and spasms)for awhile...since spring of '96.  Am very glad I didn't know about the symptoms of ALS when my Dr. sent me to a neurologist.  His diagnosis was BFS, which he said he also had, so I figured he must be right.  He also said there was no known cause or cure but told me to reduce stress and stressors, such as caffeine.  
   I used to drink at least one diet pop per day and used nutrasweet several times per day.  Then I read about the neuro symptoms and decided to stop consuming it.  WOW, what a difference!   For several months I didn't twitch, but then it slowly started again but it's not as bad as before.  
   Since then, I started getting treatments from an accupuncturist.  The treatments aren't much fun (I'm very sensitive) but they have helped.  They also relieved the extreme itching that I sometimes got on my feet (no rash or other symptoms). I went the nontraditional medical route because I didn't want to end up taking a bunch of drugs that could then cause other problems.
    Learning to take life, work, etc, a little less seriously, remembering to look on the bright side of things, and prayer have all helped, as well. Good luck to all fellow "twitchers" and get off aspertame!

[mikako]

I had the same exact symptoms as Karen does. It all started a year ago when i had series of stressful events in my life. I was worried so much despite of the negative results of EMG, CT and blood work. Doctors told me they are psycho-somatic. Although in disbileif, I finally convinced myself in not having anything fatal, started back on exercising regularly and in a lot better mental status now. My consentration now is to  control the symptoms by practicing a healthy life style. Twitching seems to have deminished greatly, although tingling and altered sensation still remain. I think exercising must have helped my twitching, since i know it always returns after being inactive for a few days. I am still skeptical that all these sprouted from my psych, It sure did not harm me to believe that.

[mikako]

I had the same exact symptoms as Karen does. It all started a year ago when i had series of stressful events in my life. I was worried so much despite of the negative results of EMG, CT and blood work. Doctors told me they are psycho-somatic. Although in disbileif, I finally convinced myself in not having anything fatal, started back on exercising regularly and in a lot better mental status now. My consentration now is to  control the symptoms by practicing a healthy life style. Twitching seems to have deminished greatly, although tingling and altered sensation still remain. I think exercising must have helped my twitching, since i know it always returns after being inactive for a few days. I am still skeptical that all these sprouted from my psych, It sure did not harm me to believe that.

[mikako]

I had the same exact symptoms as Karen does. It all started a year ago when i had series of stressful events in my life. I was worried so much despite of the negative results of EMG, CT and blood work. Doctors told me they are psycho-somatic. Although in disbileif, I finally convinced myself in not having anything fatal, started back on exercising regularly and in a lot better mental status now. My consentration now is to  control the symptoms by practicing a healthy life style. Twitching seems to have deminished greatly, although tingling and altered sensation still remain. I think exercising must have helped my twitching, since i know it always returns after being inactive for a few days. I am still skeptical that all these sprouted from my psych, It sure did not harm me to believe that.

[mikako]

I had the same exact symptoms as Karen does. It all started a year ago when i had series of stressful events in my life. I was worried so much despite of the negative results of EMG, CT and blood work. Doctors told me they are psycho-somatic. Although in disbileif, I finally convinced myself in not having anything fatal, started back on exercising regularly and in a lot better mental status now. My consentration now is to  control the symptoms by practicing a healthy life style. Twitching seems to have deminished greatly, although tingling and altered sensation still remain. I think exercising must have helped my twitching, since i know it always returns after being inactive for a few days. I am still skeptical that all these sprouted from my psych, It sure did not harm me to believe that.

[very similar symptoms]

Kimberly, I get twitches like that that have lasted for a couple of months at a time in three different spots on my right foot. They are very fast and they almost seem  constant sometimes. Those are the worst. I wish I knew what causes these twitches. I hope we all find an answer soon. Laura

[Glad?]

I used to think that I was the only only one with these anoying twitches!  I guess it makes me feel a little better to know that I am not some sort of freak or something!  Thank you all for your postings!

Glad

[A question from Kimberly]

Have any of you ever had a twitch in a specific area that has lasted more than a day?  I've twitched on and off for two years. I thought it was getting better, but yesterday my the right side of my hand started twitching and it is still going on.  It twitches about twice every thirty seconds or so.  The twitch causes my pinkie finger to move.  This scares me.  I hate these twitches!!  Has anyone experienced similiar symptoms?
Thanks!

[anon]

AMEN!!!!!!!!!!

[Lynne]

After reading all your entries, I cannot tell you how much better I feel. I have been having twitches all over my body for over a year. I never went to the Doctor because I was so scared I had ALS. I've never had any other symptoms, but medical books NEVER mention benign twitches. I never thought so many other people had these twitches. I'm a very nervous person, I've had panic attacks and I work in the health care field. I started having these twitches after reading about ALS. I think knowing too much can be a bad thing, for someone with my personality. Thanks to everyone. Next time I start twitching, I can put it out of my mind much easier. I thank God everyday for my health, and pray for those who are sick.  What a wonderful day it will be when they finally have a cure for all of our illnesses.

[Charlie Cat]

Muscle twitching can be related to "Restless Leg Syndrome" which tends to go with fibromyalgia and Chronic Fatigue Syndrome.  Has your doc. tested you for tender points?  The twitching is annoying.  Try Klonopin at night and a muscle relaxer like Baclofen 3 x day.  You might find relief.  Also, since I have both of these diseases and myofascial pain syndrome I use a TENS Unit and often times I put it on my legs to stop the twitching.  Talk to your Doctor about FM/CFIDS, restless leg syndrome and medication.  Yes, your legs will become very tired if you have Chronic Fatigue;  they'll feel like they belong to an elephant instead of you.  Flare ups come and go.  Sometimes you will stay in a flare up for years if you don't get help.  Med's will help.

Good luck.

[chris]

Candace,

I can relate to all of your anxieties and frustrations. I was 24 when I began twitching <everywhere> 5 yrs ago. I too went through a period of dispair but finally did make a conscious effort to live with it because it didn't appear to be causing any other health problems. Oh, and it helped that I didn't know a thing about ALS.

Since the onset of my fasciculations came in the very early days of the internet's use (1995), I never thought to research the symptoms. Curious one day in 1997, I searched the web for 'muscle twitching'. I got all kinds of hits for ALS which scared me to death but on the same search I found a link to Mass Generals Neuro Message Board where they have a 'Neuromuscular' forum. http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics. If you haven't beeen there, you should definitely check it out as most everyone in there has the identical symptoms and can re-assure you that these are very much benign twitches.

I hope this can relieve some of your anxiety. Feel free to email me if you need someone to talk to about it. ***@****

[Chuck]

I have been having muscle twitches since 1986.It is primarily in my legs.i have gone through numerous tests and am always told that it is benign faciculations and don't worry about it.Worrying does make it worse.I really believe that back problems are the cause.Do you have back problems?Doctors will tell you that back problems are not the cause,but i wonder.Good luck to you.I hopes it helps for you to know that i have had mine since 1986 and no muscle weaknss has developed.

[Chuck]

I have been having muscle twitches since 1986.It is primarily in my legs.i have gone through numerous tests and am always told that it is benign faciculations and don't worry about it.Worrying does make it worse.I really believe that back problems are the cause.Do you have back problems?Doctors will tell you that back problems are not the cause,but i wonder.Good luck to you.I hopes it helps for you to know that i have had mine since 1986 and no muscle weaknss has developed.

[Chuck]

I have been having muscle twitches since 1986.It is primarily in my legs.i have gone through numerous tests and am always told that it is benign faciculations and don't worry about it.Worrying does make it worse.I really believe that back problems are the cause.Do you have back problems?Doctors will tell you that back problems are not the cause,but i wonder.Good luck to you.I hopes it helps for you to know that i have had mine since 1986 and no muscle weaknss has developed.

[Chuck]

I have been having muscle twitches since 1986.It is primarily in my legs.i have gone through numerous tests and am always told that it is benign faciculations and don't worry about it.Worrying does make it worse.I really believe that back problems are the cause.Do you have back problems?Doctors will tell you that back problems are not the cause,but i wonder.Good luck to you.I hopes it helps for you to know that i have had mine since 1986 and no muscle weaknss has developed.

[Chuck]

I have been having muscle twitches since 1986.It is primarily in my legs.i have gone through numerous tests and am always told that it is benign faciculations and don't worry about it.Worrying does make it worse.I really believe that back problems are the cause.Do you have back problems?Doctors will tell you that back problems are not the cause,but i wonder.Good luck to you.I hopes it helps for you to know that i have had mine since 1986 and no muscle weaknss has developed.

[lisa]

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.

[bill]

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