Hi everyone my name is Blair and I live in Atlanta, Ga. I am 36 Years old and I have been having problems with muscle twitching in my calf's for 2 1/2 years ! I have been to MANY, MANY DOCTOR'S + Neurologist, and Rheumatologists. So my major symptoms are muscle soreness in my thighs- like a HOT Kinff, Twitching in my Calf's, exercise intolerance/fatigue with a elevated C.P.K. as low as 189 to 489. I have had a FULL WORK UP including a Muscle Biopsy - ( It was Neg. for everything!), My Aldolase was 5.0 and Normal, I also have had two (2) Needle EMG- (By the way they REALLY HURT!) The first one was at 4 mos. and the second one was at 14 mos. they were both Neg, EEG was neg, ALL MRI's were Neg., EKG was also Neg., All other blood work has been Neg., My MYOGLOBIN was a little high at (55).....The doctors have all more or less dismissed there being any Problems??? They can not find anything wrong ??? I am concerned about ALS because I have had the muscle fasciculation's.....Can anyone give me some in site to might be going on with me ????? Oh, and the fasciculation's seem to come and go,.
Have you tried alternative medicine? Sometimes when western med fails, it's useful to try a different way to look at the problem. Maybe an acupuncturist? I used to work for a vet that did some acupuncture. I saw dogs that had to be carried in from terrible arthritis/hip dysplasia / brown recluse bite etc, that consistantly walked out of the office afterwards. No amount of steroids and other treatment could get those results. It changed the way I thought about it myself.. :) The other good thing about trying alternative practitioners is that you might be able to find someone who carefully listens to what you are saying and understands the body and may have insights.
Please check out AboutBFS.com.
It sounds like benign fasciculation syndrome.
Unless you are having muscle wasting and weakness, twitching
is nothing to really worry about.
I too have twitched all over for about 3 years. I have seen the
neurologist many times, and had MRI s of spine and head.
And also the nerve conduction tests. All normal.
You do not have fasics that come and go, with ALS.
With ALS the twitching is usually quite fine....sometimes need a special
light to see them.
It is because the muscle is dying. Therefore you would only progress, not come
and go with twitches. There would be significant muscle atrophy by now...and you said 21/2 years right?
Please read about BFS...at the above website...check out "BFS in a nutshell",and see if it fits your situation.
Don't worry so much....STRESS totally makes it worse for me.
I take extra magnesium everyday...because I was low for it.
You may just have to accept the twitching as part of who you are now.
Hope that helps.
I would like to thank you for the useful info also! I started twitching about a month ago, it just started on my thumb/palm area, and now it's spread to just be about all over. It was weird, because my thumb started twitching right after I had carried some heavy bags on that arm, and so I attributed it to that, but after reading scary things on the internet, it seems like my symptoms have progressed. Yesterday, my twitching wasn't so bad, but then today my symptoms have increased again. Sometimes it just makes me so nervous that I have ALS, it's easy to get caught up in that, and then each twitch makes you that much more anxious.
Do you think it matters where the twitches are, as far as it being either BFS or ALS? I went to the neuro, and he said that with ALS, the twitching is usually in the thighs and shoulders, and I do get them in my thighs a lot, but I also get them in my calves, arms, hands, even on my face sometimes, such as my lips and eye. I don't think I have any muscle wasting, would I know that? I do have sore, stiff knees, but I think I've had that for a while, and also attributed that to extra weight that I have, and age (I am 47). There are bad knees throughout my family, so I didn't think too much of that. Also, they are more painful, not really weak, there's a difference, don't you think? I read where ALS dosen't cause pain. My neuro wasn't super reassuring, though, he was saying that no doctor can say whether or not it is or isn't ALS at this point, and that he didn't want to put me through needless tests, such as the EMG, which is painful, because he said there wouldn't be anything he would do differently anyway. I said that I thought that with BFS, the twitching was more widespread, sort of how mine is, and he said it can be variable, though. My neuro exam was normal so far, as far as the stuff he did in the office. The only other tests I'm doing is a blood test, and a sleep study. He said that sleep issues can cause twitching, and I guess I might have that.
I did read, though, where, usually by the time the twitching comes, there are usually other, more significant symptoms. I was just laying down relaxing, and that is when it seems like I really feel them. I had a few in my thigh, and in my arms. Yikes! It's hard not to be nervous about this! Thanks for the help! Val
Please check out the above website, (I am not affiliated with them at all)
I just found a lot of reassurance from it.
Please do not be frightened about doing an EMG test. I have had it done many time
and it is truly no big deal. I have even had it done to my tongue, so seriously, it can't be that bad. I think people get more afraid from the anticipation of the whole thing. It is uncomfortable sure,...but the electric shock thing is sooo quick, more stinging like. You ache in the spots where the needle was put...afterward...but seriously nothing BIG.
You sound like me when I first started twitching....I was convinced it was ALS.
This made the twitching worse. You don't twitch everywhere with ALS. You are right that there should be some muscle wasting in the area of twitching. I have never heard that it mostly starts in the thighs or shoulders. It can vary...from what I have read...it starts in an area of one limb, and slowly progresses, unless it is bulbar onset....then there are swallowing difficulties etc. I had a twitching tongue after reading about that one...No kidding (hence the needle in the tongue).
The neurologists do have people coming in with the twitching worries...there isn't much to do really, but relax....
I empathize with what you are going through....I occasionally still get scared about it myself...but you know what? Once I stopped obsessing about it, and stopped looking at my tongue (which I had regrettably never really looked at before, so how was I to know if it was wasting or not??) The tongue twitching stopped.
I twitch every where from time to time....even down there, for gawd's sake!!!!)
And not in a good way either-ha ha!
Your neuro would be very aware of what muscle atrophy looks like.
You wouldn't twitch on and off, here and there, and everywhere.....
Give it time...the more time that goes by with out any muscle wasting or weakness,(again the neuro has tests for this)or other outwardly significant changes...it is most likely stress....I am not a doctor....but I think you need to relax, and read about others going through the same stuff you are...check out. AboutBFS.com
Read BFS in a nutshell.
Stay away from so much caffeine, and chill out a little.
Remember too, that if the doctor's think you are too wound up, they might give you meds for it. That works for some folks, some of the meds however, can actually make you twitch as a side effect. So it can be a vicious cycle.
Effexor, was a no go for me...And too much Clonazepam made me twitch more too.
But if it calms you down, and you are aware that the twitching may increase at first...(in some people only), then maybe it would be worth it, to calm your nerves. I really hope this helped>>>Jode
You helped IMMENSELY!! Thanks so much, it really helps when you are having an anxious night, to come on here and read reassuring words like that. It surprises me that this twitching can cause so much anxiety, but it does. My brother is seven years younger than me, he is 40, and he started having the twitching years ago, probably in his 30's. I never had it myself, so I kind of wondered why he was so worried about it, and was surprised that he was concerned about ALS. He dosen't get them as much anymore, just now and then.
It's interesting how we seem to all fixate on ALS, even much more than MS or Parkinson's, I guess because if given a choice, those would be the ones we would choose over ALS. It's just such a terrifying disease, thinking your kids could see you wasting away like that. I worry so much, because I have a 13 year old daughter, and being that we live far away from our extended family, I am the main one in her life. My husband is a great Dad, but he works and travels a lot.
Yea, I just think that different neuros have different personalities, and mine was kind of the type that didn't give much reassurance, he kind of had a fatalistic attitude. I kind of like that, but was nervous also. I had never read that anywhere else either, that the thighs and shoulders are usually first. That kind of made me nervous, since I do tend to get alot in my thighs. I get alot of the 'popping' in widespread areas, but I guess I do tend to get a few areas that seem to be 'hotspots', do you get that? I generally get them on my left thigh more than my right, my left calf also more than my right, and then my hands, arms. Do you really think anxiety,and your mind can cause all of this?? Hard to believe.....
Thanks for the advice on chilling out. The thing is, last night I went in the hot tub, had some sleepytime tea with Valerian before bed,and kind of had a bad night, although I had a good day, where I didn't feel too many. Today, I woke up with them, and had them throughout the day.
Thanks again for the reassuring words, I needed that tonight! Talk to you soon~~Val
Yeah Val I do get hotspots....for months off and on..I would
get a constant twitching above my right knee. I also had a spot in my left bicep
that just wouldn't let up. I have had them in my fingers (which lots of everybodies get...no BFS necessary). My tongue for a while was twitching in the center. Big ones too. My neck has twitched and my stomach muscles (so much so that it feels like a baby moving in utero). Sometimes it is just a constant vibration....like a tuning fork has been placed beside something. I have also experienced giant body jolts (maybe just two or three times) That freaked me out.
Don't get me wrong...I still get worried too...like when a new area pops up, or I am convinced that there isn't symmetry with my muscles. I have to remind myself that I am obsessing... and I am only going to make the twitching worse with worrying.
Take care Val...Jode
Thanks! I'm sure I will feel alot better if that much time goes by, and nothing significant else has occured. That should make you feel alot better, right? Everywhere I have read says that in just a few months time, or even less, you should be having other symptoms. Given the fact that the prognosis for ALS is something like three years, you should feel 100% sure that is not what you have.
As Capital H says on here, it's easy to suddenly be aware of every symptom. Things that I might have just overlooked and not even been aware of, are now signs of ALS in my head. Today my left leg is very achy, and it seems to be stemming from my knee, which has been giving me alot of trouble. The reason this is worrisome to me is because that is also the leg that has been twitching the most, especially above the knee, and on the thigh area, also the calf.
But, of course, with me, the twitching started on the right thumb/forefinger area that lasted for a few days, until spreading around.
Thanks again, and good luck to you! Val
Thanks so much, you are so nice to put up with my obviously anxious letters!! You really do make me feel better, though, just thinking that others have this, and it's not always ALS.
Thanks for reassuring me about the 'hotspots', I was wondering about that. The one you mentioned where you twitch right above the knee, I get that one alot too! That is kind of why I was worried about my knees feeling like they go out, because I suppose that could be a weakness feeling. It's specifically in my knees, though,not really the whole leg, as far as the pain. I was just concerned, because I keep getting the twitching in my left thigh, and it's weird, it especially seems to come on if I lay on my left side in bed, or on the couch. That is probably my worst one, because sometimes it feels like it twitches so bad, it actually cramps a bit.
How long did you say you've had the twitching? My neuro said to take the 'wait and see' approach, and just see if things get worse, which would indicate something more like ALS, but that is pretty nervewracking for someone who is already nervous. It's easy to make your body have symptoms, I certainly have done it before! I was wondering at what point I should feel good that it's not progressing too rapidly. I am going to that sleep clinic on Friday, but I don't know what that will accomplish. I find it hard to imagine that lack of the correct sleep could cause these, because then why didn't I have them years ago? I have had three kids, and plenty of times of stress and no sleep, and I never had these before. I guess new things can pop up as you get older, who knows.
I hope you are feeling better, and thanks so much for all the help. I know what you mean, by the way, about the tongue thing, as soon as I read that is a sign of ALS, I had that also. And, since then, I've read where it's not really a specific sign of ALS, that it can also be associated with BFS and other things, especially just anxiety and waiting for it to happen. Talk to you soon! Val
I think we tend to focus on ALS because that is the worst it could be and what we fear the most, a relentless, incurable disease after which MS or Parkinsons would seem like a blessing.
Before I knew about ALS I used to worry about MS and Parkinsons, often as a result of reading someones personal account. I read once about a man who bought a self winding watch and took it back to the shop because it did not self wind. He was told to put it on the other arm because he did not swing the one with the watch on, this was for him an early sign of Parkinsons.
After that I discovered I did not swing one of my arms, this is true, I don't it can be seen on videos, and Dr's I have seen have noted that. However I have been told I don't have Parkinsons, on the basis that I did not have enough of a visible tremor for that by my GP and by the neurologist because he said I did not have it.
There is another explanation for not swinging my arm, and that is that some people don't.
Similarly I must have some fine tremor in my jaw going on for years now, certainly about 3 years ago I could not hold the x ray film, still between my teeth at the dentist. Yet subjectively I feel it is getting worse now, and I have seen my tongue do all sorts of things I have never seen before (because I never looked) and now I feel fasciculations and wierd sensations running down the sides of my face, and most particularly when I feel nervous.
If someone says that fasciculations with ALS are very fine ones, then I will start finding that sort. I notice that when my fingers tremble (which they do Parkinsons ruled out or not) that you can see all the muscles that activate the fingers writhing away under the skin just like those ALS fasciculations. Yet my fingers don't tremble constantly, usually when I put my hand in certain positions and particularly when holding a mouse my thumb and forefinger start a fine pas de deux.
There never seems to be an end to it as if I don't worry about one symptom I will start worrying over another.
I seem to get every variety of twitch it is possible to have to, from that tuning fork sensation (that is the first time I have seen what I sometimes feel accurately described) which is invisible, to massive jerks, it actually had me worried about epilepsy at one time.
I probably get multiple twitches for all different reasons, the only common factor seems to be that it is often associated with muscle tension, and the twitch is like relieving that tension, as I get mild cramps too, more than ever now I have read it can be a symptom of ALS.
Thing is how to distinguish what process is going on, and what is not, because I definately do have something going on with my left foot, and it seems to be getting worse, however now I seem to be getting pain with it as well which is much less likely to be ALS and something familiar like sciatica as it does relate to discomfort and pain at the base of my spine on the same side.
The face thing may be related to tension in my neck as apart from my leg I have this persistant problem in that region, that has led to some definate symptoms in my left arm.
Sometimes though after a bad night I can wake up like I have had a stroke as it all seems to be down one side.
The most persistant twitch that I can't get rid of right now is with my left eyelid.
I have had twitching in my arms and legs (especially the calves)--really almost everywhere since I was a teen or maybe a child.
Recently, I have had it bad under my eyes and around my forehead.
I take Miramax and Clonazepan. I think this may be related to restless legs syndrome. It sometimes starts out that way and then twitching .
I've explained the forehead thing to doctors and they seem puzzled. I've never gone to a neurologist because I've had it so long and think it might be a genetic thing.
Im now 65, and I figure I'd know by know if I had Parkinsons or ALS. By the way I also have rheumatoid arthritis--don't know if that is related or not. But I think anxiety may play a role here, and I notice that if I have been very active, it's worse.
I'm writing to address your symptoms and offer a possible answer. For the past year I've had twitching in my left calf and it progressed to both calves, then a few twitches here & there on my body and then a few twitches on my face, cheek and mouth area. This fall I started aching in my thighs, other large muscle groups, and having muscle fatigue. I was quite concerned as my father died of ALS. I talked to my med. dr. about it and he scheduled me for MRI. However, ALS is difficult to diagnose so I'm not relying at all on MRI results. IN THE MEANTIME, I visited my Nathuropathic "dr.". She specifically tested my nervous system. My myelin sheath tested strong. (The myelin sheath covers the nerves. In ALS patients, the myelin sheath dies.) My neurotransmiters tested strong. However, my MODULAR-TRANSMITTER (it's a substance which the transports the neurotransmitters) was shorting out which would cause twitches which causes muscle fatigue which causes aching which causes a lot of worrying! She told me to take 2 tsp. of Nature's Sunshine flax seed oil daily. I bought a bottle of Barleans (high quality store flax seed oil), but had to take 3 tbsp. of it. By the second day the twitches diminished by approx. 60%. I was amazed after having coped with these symptoms for over a year. I then ordered Nature's Sunshine flax seed oil and began taking 2 tsp. daily. The twitches have decreased by approx. This fall I started aching in my thighs, other large muscle groups, and having muscle fatigue. I was quite concerned as my father died of ALS. I talked to my med. dr. about it and he scheduled me for MRI. However, ALS is difficult to diagnose so I'm not relying at all on MRI results. IN THE MEANTIME, I visited my Nathuropathic "dr.". She specifically tested my nervous system. My myelin sheath tested strong. (The myelin sheath covers the nerves. In ALS patients, the myelin sheath dies.) My neurotransmiters tested strong. However, my MODULAR-TRANSMITTER (it's a substance which the transports the neurotransmitters) was shorting out which would cause twitches which causes muscle fatigue which causes aching which causes a lot of worrying! She told me to take 2 tsp. of Nature's Sunshine flax seed oil daily. I bought a bottle of Barleans (high quality store flax seed oil), but had to take 3 tbsp. of it. By the second day the twitches diminished by approx. 60%. I was amazed after having coped with these symptoms for over a year. I then ordered Nature's Sunshine flax seed oil and began taking 2 tsp. daily. The twitches have decreased by approx. 98% and the aching in my muscles is improving significantly and I feel stronger. I'm not saying this remedy will fix your symptoms, but it might be worth a try. My suggestion is for you to find a good Naturopath ask to have your nervous system muscle tested. My neuropath had to get quite specific (in fact, when my neuromodulator tested weak, she didn't even know what the neuromodulator is) with the muscle testing to find out what was going on in my case. Feel free to write back if you want further info.
I'm 26 years old, and started twitching about 6 months after my 2nd baby was born. I had muscle burning on the left side of my face down into my chest on the left side. Also, an eyelid twitching, and various other twitches all over. Sometime, my feet would feel like they were vibrating. Also, my finger joints just ached. After dozens of tests, my doctor found my vitamin D level to be low. We figured it was worth a shot. I know take Vitamin D-3, a little magnesium, a little potassium, & some fish oil. The twitching diminished by about 75%. They think the rest is anxiety, but I think only time will tell.
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