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1475492 tn?1332884167

Muscle Jerks

I have a couple questions.

I have had muscle twitches for nearly a year now. It was my presenting symptom. It started out as the full body jerk you get when you fall asleep, except that it progressed to happening every night and I was wide awake.

Those stayed and then I started having the twitches (little muscle twitches like you eyes twitch) but it was primarily ocurring on the left side of my body - my bicep, my quad, my calf, the bottom of my foot. Those progressed and at my worst they were all over my body... I felt them EVERYWHERE... yes, even in very private areas. They still primarily ocurr on the left side of my body but I'll sometimes get them on the right as well.

The part that is concerning to this is they haven't gone away - they get better for a bit, then get worse when I'm not feeling well or near my cycle.

I also get what I would refer to as random tics. It's not a tic more like a muscle jerk.  I can feel the sensation of energy starting and then my arm or left will move. It is almost always my right arm and my left leg - sometimes my right foot.

I am also really concerned about a couple new symptoms:

My muscles ache lately (a deep ache that seems to radiate but doesn't specifically start or end anywhere) these are usually in my bicep or leg and sometimes my forarm. I will rub it but it keeps coming back.  Is that spasticity?

The most worrisome is a sensation that my fingers and hands feel tight (I am stretching them several times a day.) I am really concerned about the sensation that a few of my fingers feel like they are trying to lock up, cramping (?), or become super stiff they don't want to move normal. It's worse in my left hand where I have left arm/hand tremors.

I am normally extremely flexible - one of the people that the doctor's are shocked at my flexibility (I can bend my thumb all the way to my wrist - so this is not normal for me. I'm a bit worried this isn't an MS thing. I also can bend over and touch my toes without working at stretching.) Does anyone have any idea what this could be?

Has anyone else had these?

35 Responses
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Avatar universal
I have had weird foot symptoms for many years.  I thought it was restless leg because it subsides when I move around.  But when I walked a distance, then my feet would become numb.  I have been diagnosed with a slight case of sleep apnea and very little deep sleep, so I consented to a CPAP machine.  I left my management position because the symptoms in my feet were worsening.  When on vacation with my family one year, We did so much walking that my feet were completely numb and I fell.  Despite constant stretching, the symptoms would return.  Finally went to see a neurologist who ruled out many diagnoses and treated me for restless leg.  On Requip for a year, but every 6 months my symptoms worsened to sharp stabbing pain and more jerking, and waking up more often at night.  When I finally hit 1mg of Requip, my heart rate was increased, my skin was red, my blood pressure was elevated, and I had pitting edema, as well as numbness everywhere.  I had another EMG which showed neuropathy this time.  So switched to other meds, that did not work.  Amitriptyline worked for awhile, but when uping the dose, I became a zombie.  Tried Neurontin, Tegratol, Lyrica, no on Cymbalta.  Cymbalta seems to quiet the sharp stabbing pains in my feet, but every now and then my feet or hands jerk.  Having fast heart rate again with reddened skin, ear pain, joint pain, muscle soreness.  MS has been ruled out.  I did switch to a Paleo diet which seemed to work, but now that the cold weather is setting in, things are worse.  Ultram and Tizanedine seem to help, but neurologist says those are not meds to take all the time.  Now trying Peppermint oil on my feet, which I think works sometimes.  Any other suggestions?  I have looked into environmental issues that can cause this neuropathy and have concerns now about our wall to wall vinyl flooring and our chlorinated swimming pool.  Any suggestions?
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Avatar universal
Are you still having this and if so, what medicine did the doctor give you?
I am having the same that you described and it is unbearable.
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Avatar universal
My jerking only happens at night or when I lay down to sleep. It feels like a build up of pressure and the only release for that pressure is for my arm to jerk or chest muscle to jerk. Sometimes I have gotten up and done some push ups and that often stops the jerking so I can fall asleep. Once I am asleep there is no more jerking or spasm. It only happens when I try to fall asleep.
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Avatar universal
Your joint hyper mobility suggests you might have Ehlers-Danlos Syndrome Type III, a genetic connective tissue disorder that is often misdiagnosed as MS in people with more prominent symptoms such as dysautonomia, the related spinal stenosis that can occur, POTS, fatigue, etc. There's a wonderful patient community for EDS sufferers at EDNF and a new research center in Baltimore that just opened up. I highly recommend you look into this. Most doctors know little to nothing about EDS, and we've been diagnosed as hypochondriacs for years (until a group of physicians and researchers around the world started working hard to get our concerns taken more seriously.) Good luck.
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Avatar universal
You need to see a neurologist for starters and be prepared for many tests to rule out the mimic diseases.  After reading your symptoms, I think you might want to include a cardiac doctor to make sure and rule out that area.

Welcome to our forum.  Perhaps if you start a new 'thread" or topic when you write again, it will help.  This was tacked onto a very old one and people tend to often ignore those if they do not have time to go thru all the old postings to finally find yours.

Sarah
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Avatar universal
for two years now i have been having really bad spasm or thats what i call them and the whole left side of my body my face, my arm, my hand, my leg. and its really embarrassing when it happens in public because my whole left side, even my face contorts and it looks scary to other people around me im sure. it mostly happens when stand up like when im getting out of a chair. and i am only 23. i also have chest pains headaches and blurred vision. What is wrong with me?
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Avatar universal
if you are hypermobile in your joints like the thumbs and so on then that could be the cause of muscle spasms, which cause the knots and then pain in the muscles. sitting for long periods is the worst. typing makes me hurt and exerice like pilates or simple stretching helps, a little often. wwe are designed to move. we need our muscles to support our bones and joints. i found out through immobility how imporant this is. yes alcohol, white flour, dehydration and heat or cold extremes ....so i am trying my way as teh doctors think i am mad.
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Avatar universal
Sorry I forgot what else you said. Yes I did find another Neuro but I couldn't get to see him for 7 months in between so the worst thing that old Neuro did was basically prevent me from being able to be on any medication for 7-9 months after I was diagnosed because I wasn't going to submit and take Gilenya and then I had to wait to see the next guy.

In my MS journey so far you know what I've realised? This society we all live in, whether we agreed to be bound by it and it's rules or not, its just a name for an agreement, a very traditional type agreement. Simply, we all agree to live together side by side as human beings, for the benefit of all people in that society, to be able to live comfortably, without fear, to be happy, to make their own contribution back into the group for the benefit of all and to receive the same from each other person. We agree to this in principal because our 'intelligence' tells us the alternative is hard and actually moving backwards, it's the most beneficial structure for us as individuals and for humanity, its civilized and encourages growth and development and evolution even. You get what I mean. The only reason millions aren't out there robbing grandmothers at ATMs, doing armed hold ups and murder and blah and blah is because of this society or social agreement. Because the benefit and reward offered by it is far far greater than total freedom through anarchy? In this system you can also be assured that even if you get unlucky and sick or hurt or whatever that you will be ok. No man/woman gets left behind. The system accommodates for these circumstances and that's the whole idea, its your insurance, sacrifice the better part of your life towards the group and when and if your time comes that you are reliant on the group you are covered, no question. Well going back to the question at the start of this paragraph, what I realised is all of this I've said about society, its ********. It's a total lie, a scam and you'll only find out when its too late. I realised I was/am the only person who fell for this ****. No one is there when you really need it, not a doctor, not a policewanker, not a politician, not your neighbour, not your 'friends' and rarely even your family. You make the sacrifice up front on good faith and then, when you need to make a claim on your society policy what do you find? Just a scam, thanks for your contribution, but now, sick or whatever, you're a faker and you're on your own. This reality pisses me off like I can't even begin to describe. Probably because it makes me feel naive and stupid for accepting such terms against my better instinct.
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Avatar universal
Hi,

thanks for your messages and the information. I am absolutely going to look into that further. That Neuro was the biggest try-hard bully I have ever come across. I say try-hard because all I wanted to do was slap him across the face and take his lunch money and say "that's how you bully someone nerdboy, see you tomorrow." He said other things as well, such as "If I were you the I would be on Gilenya" and when I was asking about the variety of meds and some details he said something to the effect that "If you want to look at the other meds then I'll have to refer you because I am only concentrating on Gilenya." He was seeking my authority to put all my data onto an international database of Gilenya patients, etc, etc.

Recently I went to see some professor from Germany or something like that come to speak about MS history and treatments as it is like the 30 year anniversary for MS (?) anyway, I picked him as a company man early into his speech too he was very patronizing and quick to move past some meds, but when it came to Gilenya he mentioned something about the benchmark of having prescribed 100,000 patients with Gilenya worldwide like it was some personal victory. That's when it all clicked. Not enough trials time and too many adverse reactions and so lets substantiate it another way and force it down as many throats as we can, get the numbers and then no questions.
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5112396 tn?1378017983
I also meant to encourage you to copy what you wrote here and start a new thread with it. We're writing on one that it years old and a lot of people may skim over it.
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5112396 tn?1378017983
Hi there. You'll probably get more of a response once the work-week starts. It's pretty quiet around here on the weekend.

I'd find another neuro ASAP. That's NOT the way the world works. It's very serious. It can and does result in lost licenses, huge fines, and legal action. The company producing Gilenya is facing serious charges in this area. http://www.reuters.com/article/2014/05/29/us-novartis-lawsuit-idUSKBN0E924Y20140529 He should be concerned about you reporting his comments. I certainly would.

There is precedent for this in the area of MS drugs as well. http://www.bloomberg.com/news/2011-05-04/merck-kgaa-units-pay-44-million-to-settle-false-claims-suit-1-.html
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Avatar universal
I don't know if anyone cares or will find this useful, I guess I don't care....

Diagnosed 18 months ago, optic neuritis right eye (I think it was the right?), totally blind in that eye for 8-10 weeks. I would guess that I actually had MS from about 2 years prior to this just in hindsight I had various symptoms which I guess I was able to ignore.

I have a terrible tremmor in my hand, both hands, which I have had since I was about 15 (now 33) and it's gotten worse and worse to the point where sometimes i cant help but spill, or drop or whatever it is im doing. My hads are also 50% numb and I have complete lock up spasms in my hands everyday.

My back feels totally numb like if you were to press your finger tip into my back I can't tell where you are touching its like displaced and weak sensation. Also feet, hands and face.

Burning sensation occurs daily but mainly across my whole back and knees! My knees they hurt especially when I get tired and run down and need rest (all the time).

Cognitive issues, what's my name again? No seriously where did I put the keys? Stop making my life more difficult where is my wallet? Who are you again??? And so on.

I wake up at 9am, must nap again by 11.30, exhausted. 2.30 - 6.00 then nap 6 - 9 then usually 9pm - 4am then exhausted.  I constantly move around the house falling asleep from room to room.

Now muscle twitches and restless sleep but in a really queer way. Habe you ever been prescribed Endone? It's a morphine style painkiller in a tablet. Anyway when I broke my hand once they gave me Endone at the hospital after the operation. The way Endone kills the pain is to really just distract you, take your mind off it. I makes you feel like you have fallen asleep and so you're in this dream like state but you're still half conscious too and so it's not real sleep its just on the edge of the real world and dream world. Point is I can't seem to get proper REM sleep now without marijuana. Otherwise this middle state is as best I can get to and when it s like that I have these constant twitches that literally jerk my whole body so much I wake up or accidentally hit or kick things around me its just like a lighting bolt his me and I gasp and jerk awake time after time after time after time. It feels like I'm falling which leads to this jerking awake. Also while trying to sleep like that I talk in my sleep so much and I also move my hands like acting out the 'dream'. A lot of the time I wake myself up by talking that's how I know I do it. Then the other day it happened while I was awake? Uh Oh.

I have had many other symptoms, pretty much all of them I think. You want to hear a sick joke? There is one symptom I have not had. I have a king kong sized libido okay, unparalleled, in all of human history I'd bet on. That's great I hear you say good for you. Well while the rest of my brain and therefore body is literally failing and falling apart around me what do you think would be the one thing I wouldn't suffer from. Yes no dysfunction for me. Now I can just want it and have worse and worse chance of getting it. I have to laugh, it's cruel but fits the theme.

I have had 3 MRI's now with another one coming up in a month each one has been worse than the last. Progression on each one. I've been taking Tecfidera, feels like its done less than nothing, useless I'm suggesting, for me anyway don't be discouraged I picked that one for a reason, because it seemed to me to be the one that is least disgraceful. All MS meds are sad sad excuses for medications after 30 years and no one will even tell you how much money in research. I think all the meds at this time are worse than MS itself.

Neurologists are **********. My first one tried to force me to take Gilenya and I mean almost literally forced. He would say "if you think you know better than me then fine" and "if you won't take Gilenya then I will have to refer you on because I can't help you". I called him out one day and said he was getting kickbacks for putting people on Gilenya. He said "That's the way the world works" end quote.
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Avatar universal
My name is Jerry ,and I was diagnosed three weeks ago I'm 54 years old ,they said it was spasticity ,they also said I could have had MS for along time and now the systems are just now showing up ,and I'm scared I shake  ,jerk what ever the ------- you call this stupid thing ,I went for a sleep study and they said it was rls - restless leg sendom ? That was before I was diagnose with MS ,and I was find. with rls then my twitching has become more aggsevive ,now it's moved pretty much all over ,legs  ,my joints hurt ,my fingers ,hands get so stiff , and yes even sometimes not always my privates .
I went to church and almost had to leave the jerking started again in my legs and well it scared me ,cause I've only seen the doctor once,and my next appointment isn't till October ....to be honest they started me on (Baclofen) 1/2  3 times daily just been on it couple weeks and it's not helping at all I called the nurse 2-3 times she says it's going to take awhile to get in my system,well in the mean time ,I'm not sleeping and when I do dose off ,my jerking wakes me up and my wife as well ,so I'll get up all times of the night and really don't go back to sleep until the next night starting all over again.just wanted to know what everybody else takes or after I get the to full dosage will this medicine help control the jerking ...can you give me some advice ? Please I'm desperate ...I use to be so active now ! I'm trying to be strong especially in front of my wife ,but it's beginning to take its toll.( IF  YOU COULD  GET TO ME ASAP )  THANKS FOR KINDNESS
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Avatar universal
Medical marihuana is becoming more available and even if not near you can be obtained on the web without prescription. It treats spasms, MS, Parkinsonism, Epilepsy and many other illnesses. It is the most magnificent medicine, with no side effects. It's worth a try to buy a little of the Phoenix Tears Hemp Oil in syringe. Buy a small amount to start. Dosage is only 1/3 of a drop put on the finger and rubbed  under the tongue. Forget about smoking or ingesting the plant any other way or getting high. It doesn't do that. It's not for that. It also treats cancer, diabetes, heart disease, migraine. The list is endless. It's absolutely worth trying. ASK THE WEB FOR INFORMATION ABOUT IT.
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Avatar universal
I have every one of the symptoms that you mention, and have been diagnosed with Narcolepsy. That is where you keep falling asleep all the time, through the day, but can't get to sleep at night. I get the pain, numbness, jerking more when I've been eating sugar, or drinking alcohol. Processed food also makes the problem worse. If you can eat a lot of fruit and veg, stay away from sugar etc, and do some mild exercise, it will help. The other item of interest in the above posts is lack of oxygen. Narcoleptics tend to stop breathing through the night and wake suddenly because of lack of oxygen. This (for me) is associated with the twitches and so on. Try sleeping on your side with your head tilted slightly backwards. This will open up your oxygen channels. It really helps me. Sex and orgasm are good, too, for assisting with the twitches. Once saw a film about a woman who was having a baby and she had given up sex for a while, and so was not getting any orgasms. Her legs were twitching all over the place. I think the twitching is a substitute for the twitching of orgasm, although I know it sounds gross. Hope this helps.
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Avatar universal
I have every one of the symptoms that you mention, and have been diagnosed with Narcolepsy. That is where you keep falling asleep all the time, through the day, but can't get to sleep at night. I get the pain, numbness, jerking more when I've been eating sugar, or drinking alcohol. Processed food also makes the problem worse. If you can eat a lot of fruit and veg, stay away from sugar etc, and do some mild exercise, it will help. The other item of interest in the above posts is lack of oxygen. Narcoleptics tend to stop breathing through the night and wake suddenly because of lack of oxygen. This (for me) is associated with the twitches and so on. Try sleeping on your side with your head tilted slightly backwards. This will open up your oxygen channels. It really helps me. Sex and orgasm are good, too, for assisting with the twitches. Once saw a film about a woman who was having a baby and she had given up sex for a while, and so was not getting any orgasms. Her legs were twitching all over the place. I think the twitching is a substitute for the twitching of orgasm, although I know it sounds gross. Hope this helps.
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Avatar universal
All mentioned above are symptoms am going through for the past 6 wks. Honestly don't have the slightest idea what to do and how to end it. After reading in this forum realize that it's never ending story as it has arrive or will prolong. Any suggestions what can be done to controll and ignore it looking forward for some positive post.
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Avatar universal
to those who replied- well, i dont know yet what they are gonna do. i see the neuro for the first time tomorrow. i guess i am just worried about telling him about this symptom, if its something he would discount and write me off as anxiety or if its a known neurological thing. Know what I mean?

I am just getting more anxious about the appt. I have a lot riding emotionally on it. if he blows me off, like so many docs have before-I just dont know what to do. thats why i am scared.  
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704043 tn?1298056844
i have had electric shocks very bad- very scarey- then after 6 weeks am fine-
but anyway  you are not nuts!!   if you are lol we all are!!   hugs
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1475492 tn?1332884167
My twitching and jerks started out intermittant but have progressed to being chronic - if I'm in a flare they will increase in frequency and severity (become stronger).

I get the electrical build up where it can be super fast and the jerk happens nearly immediately... or I can sort of feel it coming on over a few seconds to minutes and the I jerk.

When all this began for me... I had three weeks where I felt an "energy" all over my body. At that time, I was having the muscle twitching and "tic like" jerks all day long. I sincerely felt I had developed a "tic" but it's not. The myoclonus is in my left leg, my left hip, my stomach/back area, my right arm and shoulder.

I also get a pressure sensation in my waist/rib area. I have had the pressure feeling in my waist for a month now. It feels like it's starting to let up now. At my worse, the pressure was under my rib cage, it felt like something was "swollen" all along my upper abdomen. It was very uncomfortable.

You aren't losing your mind. What tests are being ran on you?
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Avatar universal
i hope its ok to ask a question since the discussion is muscle jerks. i too get that electrical buildup think usually followed by a muscle spasm. it comes and goes, going on for days or even weeks, then seems to go away for months. does that happen to anyone else too, that its intermittent like that? the episodes usually do go along with other neuro symptoms, basically they are part of an exacerbation or flare of whatever i have got.

the other question-do you ever get the electric feeling and the jerk is delayed, just staying there for quite awhile? i had  it when this flare started and it was just about my whole left side below the neck. lasted for about 4 or 5 hrs and was terribly uncomfortable. it was really hard to get distracted from it, and made doing anything harder because i couldn't seem to concentrate  on anything but that. finally i gave up and took a Valium and went to bed. when i woke it was gone but that's when the really tight muscles on my ribcage started, just on the left. like i was being squeezed from behind by someone but only on the left. lasted for days.

i'm really wondering if this electrical buildup that doesn't go away is bizarre and i am crazy. or is it something that happens to other people too. it is really scary. i have my first neuro appt on tuesday and don't know how to explain this to him or even bring it up, im afraid he will think its just anxiety.
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1658667 tn?1310091382
I have had similar things too (un-dx though). The other day my index finger just started juming up and down. It lasted for about an hour and then quit. I get eye and lip twitches that will last for days. I also have spasms in my lower back and on the right side of my neck. If I use my hands too much I get terrible writers cramps. I too can bend my thumb to my wrist...weird huh :D
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704043 tn?1298056844
hi-- well i was taken to hospital because of jerking! scared hubby!  anyway you probably need some meds to help- they put me on mysolene, it really helped!! id go to eat-and well it was to dangerous,you can not control it- its frustrating!!
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1475492 tn?1332884167
I've been tested. It was negative. I also don't live anywhere near tics and haven't for nearly 24 years. It's not Lymes but thank you. :)
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