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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
1406332 tn?1315962760
Wow, I could have written this myself. It's scary sometimes all the things we have in common with people on this forum.

I don't have any answers to your question but I wanted to let you know that you are not alone. I have the twitching, jerking, and buzzing constantly. It can get quite annoying.

Last week I had this on and off buzzing/vibrating in my private area....talk about DISTRACTING!!! I kept standing up, twisting, adjusting my chair. LOL.

I too can bend my thumb all the way back and bend forward and touch the floor. =)

I will be watching this question b/c I'm curious to see what others have to say.

Thanks for posting your story and hope you find some relief for your symptoms.

-Kelly =)
338416 tn?1420045702
Hey, just at a guess, I think you're talking about three different issues.  I've had them all, so I can relate!

Muscle twitching:  Experts say this is not an MS symptom.  I think it's because they've never had MS.  I have twitching in all the areas that are affected by lesion activity.  Face, especially the small muscles around the mouth and eyes.  The bottom of my left foot.  The back of my left tricep.  And all around the areas in my spine that has lesions.

Muscle jerks: This is either RLS or myoclonus.  It all depends on why - does it feel like there's a sensation building up, and you've got to 'work out' the muscle so it'll go away?  Or is it more like an electrical charge, which builds up until POW! your arm (or whatever) jerks?  The urge to move is called 'restless limb syndrome.'  The electrical sensation is myoclonus.  I've never had RLS, but I do have myoclonus.  I get the action kind in the morning, when I'm trying to get out of bed.  My legs will tense up, and I have to wait for them to relax so I can move.  I also get spinal myoclonus, which is an involuntary movement of my back.

Spasticity:  What you describe does sound like spasticity.  I've discovered muscles that I didn't know existed.  They feel very tight and sore, and it makes it difficult to use that muscle.  I was having serious problems with my forearm and thumb muscle, as well as the esophagus.  I take 60 mg a day for spasticity, and my symptoms definitely got better.  Also try stretching.  It won't fix it, and when the spasticity is really bad, sometimes it can make the muscle go into spasm.  But it will give you some short-term flexibility.
1257156 tn?1269457869
I'm not diagnosed with anything so this is useless, but, yeah I get these. Mine seem to happen almost exclusively on the left side, although there's one that happens in the central body somewhere that jerks me forward/back and I have no idea where that one activates at.

It's one of those things most doctors seem to say is stress. Which, in their defense, it could be for some people, but when it continues for over a year, I wonder. Plus I'm just not a stress person. Oh well.
338416 tn?1420045702
Have you ever had a 3T of the thoracic spine?  They think the lesions in my spine are causing the spinal myoclonus.
1257156 tn?1269457869
Nope, the 3T doesn't exist in my HMO network. I've pondered whether or not to dump the HMO for a PPO for a year to try and get a diagnosis, but it's much more expensive, so I'm not sure when or if that will be a good option. Hurrah for American health care! Best health care system in the world, the politicians tell us..
352007 tn?1372857881
I too, just recently had a bout with myoclonus along with right arm tremor for 6 to 7 days.  It has happened before (myoclonus) but long ago.  This is the longest it has lasted.

Your muscles ache most likely from the cramping/tightening/spasms of the affected muscles.

The feeling of tightness I have in my left leg as if its going to explode and almost as if its not even a part of my body. I've had that for 8+ months.  Yesterday and today is one of my good days where it has not returned to its full potential and had just a couple occasions that it felt like it was going to start up again but it didn't.

I remember in 2006 I used to feel the floor vibrate in the nurses station, thinking it was the Xerox machine but no one else felt it.  Heh.

I noticed that my hand wont do what I want it to do sometimes (rare) initially, ie: opening ziplock bags or undoing a leash clip on my bird cage that keeps the door shut since he knows how to lift the metal bar and escape.

I think with Neurology, any sensory deficit is possible and it is nice to know when you have other people who can relate to those deficits.  I do at least.

"Myoclonus describes a symptom and generally is not a diagnosis of a disease. It refers to sudden, involuntary jerking of a muscle or group of muscles. Myoclonic twitches or jerks usually are caused by sudden muscle contractions, called positive myoclonus, or by muscle relaxation, called negative myoclonus. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Myoclonus sometimes occurs in response to an external event or when a person attempts to make a movement. The twitching cannot be controlled by the person experiencing it.

In its simplest form, myoclonus consists of a muscle twitch followed by relaxation. A hiccup is an example of this type of myoclonus. Other familiar examples of myoclonus are the jerks or "sleep starts" that some people experience while drifting off to sleep. These simple forms of myoclonus occur in normal, healthy persons and cause no difficulties. When more widespread, myoclonus may involve persistent, shock-like contractions in a group of muscles. In some cases, myoclonus begins in one region of the body and spreads to muscles in other areas. More severe cases of myoclonus can distort movement and severely limit a person's ability to eat, talk, or walk. These types of myoclonus may indicate an underlying disorder in the brain or nerves.

Myoclonus may develop in response to infection, head or spinal cord injury, stroke, brain tumors, kidney or liver failure, lipid storage disease, chemical or drug poisoning, or other disorders. Prolonged oxygen deprivation to the brain, called hypoxia, may result in posthypoxic myoclonus. Myoclonus can occur by itself, but most often it is one of several symptoms associated with a wide variety of nervous system disorders. For example, myoclonic jerking may develop in patients with multiple sclerosis, Parkinson's disease, Alzheimer's disease, or Creutzfeldt-Jakob disease. Myoclonic jerks commonly occur in persons with epilepsy, a disorder in which the electrical activity in the brain becomes disordered leading to seizures."

"Treatment of myoclonus focuses on medications that may help reduce symptoms. The drug of first choice to treat myoclonus, especially certain types of action myoclonus, is clonazepam, a type of tranquilizer. Dosages of clonazepam usually are increased gradually until the individual improves or side effects become harmful. Drowsiness and loss of coordination are common side effects. The beneficial effects of clonazepam may diminish over time if the individual develops a tolerance for the drug."

I hope you can find something to help you with this frustrating symptom(s).

Lisa

I too hope that you find relief for your twitches.  There are medications that can help
1475492 tn?1332884167
Yes, I am sorry - I wanted to go back an edit my post to reflect a better idea of my concerns, they are three separate issues.

Twitches - which are pretty normal just happen to me more than most people. I have had them in my past but then tend to last a few moments or off/on for a couple hours and I'd never notice them. This is extreme to say the least!

Jerks - I feel an electrical build up and then my body jumps. The one that ocurred every night when I laid down has subsided. It seemed to come from my hip area? It was hard to locate where it started.  Now, it's my left leg and my right arm that I feel this electrical build up and then it moves...So that is myoclonus? The doctor said something about this but didn't really describe it and said it was not a cause of concern.  

I do not feel I have RLS. I've seen that and I'm not moving at night like that night. There isn't an urge. It's definitely feels a bit like an electrical shock. I'm getting it someplace else too but at the moment I can't remember where.... I need to write this stuff down.

Spasticity: I am concerned about this. While I type and I am noticing that my fingers feel like they don't want to do what I want them too. lol ~ Is the aching related? I am wondering if the twitches are related because my left bicep was one of the muscle groups with the heaviest twitching and now it's aching.  

I am not so patiently waiting to hear from my MS specialist. Do they do anything with new symptoms despite a MRI being clear fourl months ago?
338416 tn?1420045702
It does sound like you're experiencing myoclonus.  My problem is that when they're really bad, it's not a work-correct sort of symptom.  I think I would freak people out.  I freak myself out!  

I've described this to my doctors - both the original neuro and the new one.  Original neuro seemed concerned, but wasn't sure what to do about it.  (Except schedule me for a .7T MRI - idiot.)  Neuro #2 has prescribed Keppra for me, which is sort of an anti-seizure/anti-epileptic medication.  What it does - what it's supposed to do - is calm nerve impulses.  My spinal myoclonus happens because of ectopic transmissions from the damaged lesions.  The lesions send signals up and down the spine, which seem to build up or feed back until my spine has a big convulsion, either forward or back.  At first it was just my spine, but now my legs and arms are getting into it.  Neuro #2 thinks that as the myoclonus continues, it'll get worse.  I think she's right - the jerks are getting larger and more involved.

As I understand it, the ectopic transmissions travel along ion channels in the CNS.  When a transmission happens, the ion channel 'learns' that activity.  So the more times it happens, the more the ion channels get used to doing it.  If that makes any sense.  The Keppra is there to keep things damped down, so that the ion channels don't get too used to this abnormal activity.

Here's an entry I wrote on ectopic and ephaptic transmissions:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Ephaptic-and-Ectopic-Transmissions/show/1208?cid=36

So I'm concerned that your MS specialist didn't think it was anything to worry about.  Especially since you're still undiagnosed.  If he doesn't know why it's happening, it makes no sense to blow you off.

I think you would benefit from an OCT test.  You obviously have neurological symptoms, yet your MRI is clear.  That tells me you probably have some axon breakage without lesion formation.  Have they mentioned anything about atrophy in your MRI?  An OCT (optical coherence tomography) looks at the thickness of the retinal nerve fiber layer in your eye.  They find that MS patients consistently have RNFL thinning.  I'll see if I can bump up my post on that.

Spasticity and myoclonus tell me that you probably have something going on in the spine.  Have you had a 3T MRI of the thoracic spine?
1475492 tn?1332884167
I have only had an MRI of the brain and cervical. Nothing. I am going to make another appointment with my MS doctor and discuss more concerns...and find my journal! lol
338416 tn?1420045702
Yeah, definitely push for a 3T MRI of the spine.  I really think that you've got something going on in there.
Avatar universal
LYME disease! lyme meningitis!
Had all of what u are describing. You might need antibiotics. it might be lyme meningitis.
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. :)
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!!
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
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.
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?
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
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.  
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.
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.
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.
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.
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
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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