Myoclonus / Myoclonic Jerks

[lovemytiger]

Hello all - I am new here, searching for answers as I have recently developed chronic myoclonus. It started early February I believe. At first, I thought it was a stress reaction to serious life stress/anxiety but I just think stressful/anxious thoughts just increase the intensitiy of the jerks, but is not the cause. My neurologist doesn't believe it to be "conversion" or any type of tic or anything like that.

I am 29 year old female, not diagnosed with epilepsy (EEG was unremarkable)
Just had spinal MRI on Thursday - hoping to hear back from Neuro on Monday.

As you all know - not having relief or answers is quite unsettling and I am sort of at my wits end. If I could I would just sleep forever to avoid it, but unfortunately I don't sleep well (usually wake up every 2 hours or so) I do not know if they happen while I am sleeping.

There is not "trigger" as they are fairly incessant. Usually several times a minute, sometimes every second back to back to back. Sometimes they aren't as forceful and sometimes they are pretty strong.

They are almost almost in my left foot, it jerks hard to the right a bit. Sometimes when thinking deep or worrying about certain things it goes off crazy, but usually no matter what I am doing - watching tv, surfing the web, laying down, driving, sitting, talking etc it just does it.

Lately noticed pulling in my left fingers, and my torso has been twisting, jerking sideways this past week. But it wasn't doing it a lot that I realized it may also be the same thing until yesterday I thought about it.

Not currently on medication.

Here because I am wondering:

Did anyone who had myoclonus find a direct cause? Like lesions in the brain or spine, could it be caused my a tumor? Since I do not have seizures or epilepsy, is there anyone here who has just myocolonus and not epilepsy?

Is medication the ONLY option? If so - what have you found worked best? Has anyone who has had it have it gone away for good?

Has it started simple for some and progressively gotten worse?

Any natural/home remedies? I read alcohol sometimes helps *currently drinking as I post, hoping to see some relief* if so how much ? lol Do I have to become a drunk to get some relief??

My neuro said my magnesium levels were normal.. I've read magnesium helps. But does it only help if deficient? Should I aad more if levels are "normal"

I am severely vitamin D deficient - has this ever been attributed? I read about B12 also ?? - not tested for levels yet, but she said she will.

I also have some other chronic nerve/pain issues on the left side (arm, upper back) that I've never gotten an answer for. Wondering if it's all related. Not sure how to get my neuro or primary care doctor to try to connect all the dots? Sometimes feel like they're not listening (I love my new primary doctor - because she at least refers me out when she isn't sure. My old doctor just sort of said "aww that's too bad" and that was it) and that it's not as big a deal to them as it is to me. But adding this new thing on top of having had chronic pain for years makes me not want to exist anymore. It's getting really hard.

Very sad and frustrated, hoping for some pointers here.

Thanks for listening!

 

[masterjen]

Hi, and welcome to the forums. You might also want to check a post a couple below yours and join in that conversation about myoclonus as well.
Myoclonus such as you're describing does suggest something is up, and there are a number of conditions that can cause it. Generally myoclonus is generated by the central nervous system, so either the brain or spinal cord. Lesions in the CNS can cause myoclonus, as can epilepsy, Parkinson's, Huntington's, and MS just to name a few. Poor nutrition can cause myoclonus, such as caused by the malabsorption condition celiac disease. Definitely keep on top of your neurologist to identify what is going on. If she does not seem to be too concerned or is avoiding sending you for detailed tests, find another neurologist. You say she is sending you for B12 testing - any others yet?

Have you been keeping a detailed journal in order to determine if you can identify triggers? You could consider keeping track of things like hours of sleep, menstrual cycle, diet, physical activity, how stressful your day was, number of hours in front of a computer or television even. If you can identify triggers, you might be able to control or reduce the myoclonus by minimizing or avoiding those triggers.

I'm not familiar with alcohol being a help, but I have heard magnesium supplements can help. It is safe to take low level supplements even when blood levels are normal, such as what is found in a multivitamin. You can check with a pharmacist to find out just how much you can safely take. I don't know how low levels of Vitamin D would influence myoclonus, but low vit D does affect how calcium is absorbed in the body, and calcium (among other nutrients) is important for normal nerve transmission. I hope you are now taking supplements of vitamin D (beyond what is in a multivitamin). You could try warm baths followed by stretching, cardio exercise and light weight training. No guarantee they will help, of course, but worth a shot if you haven't tried already.

Sometimes medication turns out to be the only help, but as I say make sure your neuro. is doing what she can to get you answers. Good luck!

 

[AndrewIrish]

I could write you a book on Myoclonus.

Mine I at first considered random but I eventually discerned it has triggers... I have JME... so we might be in different boats... lack of sleep is the #1 trigger for myoclonus... by a mile... if you don't get a proper 8 hours of sleep no matter what you do, you'll have this problem...

Magnesium supplements typically take 6 months of constant dosing to have any effect at all and the research is really not there that they do anything at all.

Piracetam in Europe is best drug to effect it... Keppra in the US is nearly a clone of Piracetam... short of that, get some good Benzos... things like Valium... Ativan... Klonopin... they slow the CNS...

Alcohol DOES help... but only in the moment... it 'frees' you up while you're drinking but in my case, the hangover destroys my seizure and myoclonus threshold... if you absolutely must have relief... get drunk... just make sure you can have a PEACEFUL, DO-NOTHING day the following day so you can compensate for being 'on the edge.'

My triggers are the 'intention to move', conversation etc. The jerks effect my speech and my upper body... I have 'action myoclonus.'

 

[lovemytiger]

Hi, and welcome to the forums. You might also want to check a post a couple below yours and join in that conversation about myoclonus as well.
Myoclonus such as you're describing does suggest something is up, and there are a number of conditions that can cause it. Generally myoclonus is generated by the central nervous system, so either the brain or spinal cord. Lesions in the CNS can cause myoclonus, as can epilepsy, Parkinson's, Huntington's, and MS just to name a few. Poor nutrition can cause myoclonus, such as caused by the malabsorption condition celiac disease. Definitely keep on top of your neurologist to identify what is going on. If she does not seem to be too concerned or is avoiding sending you for detailed tests, find another neurologist. You say she is sending you for B12 testing - any others yet?

Have you been keeping a detailed journal in order to determine if you can identify triggers? You could consider keeping track of things like hours of sleep, menstrual cycle, diet, physical activity, how stressful your day was, number of hours in front of a computer or television even. If you can identify triggers, you might be able to control or reduce the myoclonus by minimizing or avoiding those triggers.

I'm not familiar with alcohol being a help, but I have heard magnesium supplements can help. It is safe to take low level supplements even when blood levels are normal, such as what is found in a multivitamin. You can check with a pharmacist to find out just how much you can safely take. I don't know how low levels of Vitamin D would influence myoclonus, but low vit D does affect how calcium is absorbed in the body, and calcium (among other nutrients) is important for normal nerve transmission. I hope you are now taking supplements of vitamin D (beyond what is in a multivitamin). You could try warm baths followed by stretching, cardio exercise and light weight training. No guarantee they will help, of course, but worth a shot if you haven't tried already.

Sometimes medication turns out to be the only help, but as I say make sure your neuro. is doing what she can to get you answers. Good luck!

I haven't noticed anything that triggers it, because it is literally non-stop all day. I'd say they are more intense/frequent when I am trying to relax, or before I go to bed (and more intense when I am thinking of the stressful things I am dealing with currently)

I do not have them while walking, but if I am standing still I will have them.

The ones that have started in my torso seem to mostly happen when I am laying down. I will wake up having them now, almost every time. I am having some now, but I am sitting cross legged on my bed (my foot is going as usual)

My lumbar/thoracic MRI was unremarkable which is good and bad news. Good there's nothing wrong in my spine, bad that I still don't know why these things are happening as every doctor has remarked that they feel its something spinal. Well, it's not apparently. onder:

My neurologist Rx Neurontin and in doing a quick search I am put off by this as I have just seen over and over people complaining of neurontin making them have myoclonus or making it worse. So I just called to ask why she decided this was the drug of choice to try first and express my concerns before I got pick up the Rx.

She said after 4-6 weeks on the Rx if nothing changes she will order brain MRI (I still wish she would have just done it together while I was already in the machine for my spine last week)

I guess my next question is about neurontin. I may post a new thread about that!

 

[lovemytiger]

I could write you a book on Myoclonus.

Mine I at first considered random but I eventually discerned it has triggers... I have JME... so we might be in different boats... lack of sleep is the #1 trigger for myoclonus... by a mile... if you don't get a proper 8 hours of sleep no matter what you do, you'll have this problem...

Magnesium supplements typically take 6 months of constant dosing to have any effect at all and the research is really not there that they do anything at all.

Piracetam in Europe is best drug to effect it... Keppra in the US is nearly a clone of Piracetam... short of that, get some good Benzos... things like Valium... Ativan... Klonopin... they slow the CNS...

Alcohol DOES help... but only in the moment... it 'frees' you up while you're drinking but in my case, the hangover destroys my seizure and myoclonus threshold... if you absolutely must have relief... get drunk... just make sure you can have a PEACEFUL, DO-NOTHING day the following day so you can compensate for being 'on the edge.'

My triggers are the 'intention to move', conversation etc. The jerks effect my speech and my upper body... I have 'action myoclonus.'

I am sorry that anyone is dealing with this, especially if you are also coping with epilepsy as well!

I'm still working on getting appropriate sleep. I wake up every few hours, mostly because of anxiety I think. But I stay in bed for a long time, to try to balance "sleep" out. It would be nice to get a straight 6-8 hours without waking. I have appointment w sleep clinic in August (smh)

My neurologist just perscribed neurontin and I'm a bit concerned about gabapentin side effects, being that I've seen quite a few people post (via google search) that it caused/or made their worse.Are you familiar with this as being a choice for treating this?

my jerks aren't noticebaly triggered by anything, but do get worse when I internalize stress. My foot literally jerks every waking moment (don't know if it does it while I am asleep or not) sometimes a couple times a minute, to nearly every second. No pattern, but no cessation in months. Now I am having them in my torso too, but mostly when laying down/relaxing.

 

[masterjen]

I haven't noticed anything that triggers it, because it is literally non-stop all day. I'd say they are more intense/frequent when I am trying to relax, or before I go to bed (and more intense when I am thinking of the stressful things I am dealing with currently)

I do not have them while walking, but if I am standing still I will have them.

The ones that have started in my torso seem to mostly happen when I am laying down. I will wake up having them now, almost every time. I am having some now, but I am sitting cross legged on my bed (my foot is going as usual)

My lumbar/thoracic MRI was unremarkable which is good and bad news. Good there's nothing wrong in my spine, bad that I still don't know why these things are happening as every doctor has remarked that they feel its something spinal. Well, it's not apparently. onder:

My neurologist Rx Neurontin and in doing a quick search I am put off by this as I have just seen over and over people complaining of neurontin making them have myoclonus or making it worse. So I just called to ask why she decided this was the drug of choice to try first and express my concerns before I got pick up the Rx.

She said after 4-6 weeks on the Rx if nothing changes she will order brain MRI (I still wish she would have just done it together while I was already in the machine for my spine last week)

I guess my next question is about neurontin. I may post a new thread about that!

IMO (and speaking only from personal experience of being caught up in diagnostic nightmares) there must be a reason for the myoclonus; it isn't right to just mask the symptoms (ie. stop the myoclonus with medication) without looking into the cause. I hope your neurologist - no matter how you do on the Neurontin - is going to continue to investigate the underlying reason for the myoclonus.
I agree it is great that issues with the spine have apparently been ruled out. I assume they also checked cervical spine . . . if not, push for this when they do the head MRI. And I'd pressure your neuro. to get that head MRI. Does she have any other testing plans at this stage?
I'm guessing your neurologist requested a full blood test work-up - since you have found out your Vit. D was low and your magnesium was fine. What else did they check, and what were the results, if you don't mind my asking?
Everything does need to be done one step at a time, and I know how frustrating it is waiting for each step to happen.

 

[lovemytiger]

I had a cervical spine MRI a year ago because of a chronic issue with my left arm/upper left back (shoulder blade area) - that too, was unremarkable. I don't know if she will order it again if I don't ask. There hasn't been any injury or falls or anything since then.

I really want the brain MRI too.

I agree I do not like to mask symptoms with medication (which I why I have resisted medication for my arm situation for so long) I would like to find a cause and would like to know if this is all somehow related.

She tested for an antibody - GLUTAMIC ACID DECARBOXYLASE ANTIBODY (It came back negative)

I'm not 100% sure what other bloodwork she ran aside from the vitamin levels etc (and my primary also did bloodwork recently, most routine, before she referred me to the epilepsy neurologist. I am logging into my health network portal now to look.

I also had a normal EEG.

I am wondering if my neurologist, whose focus is epilepsy should refer me to movement disorders doctors? One of them came into one of my appointments and watched my jerks and gave his opinion, but it was quick and brief.

I do not know what other testing is scheduled. I feel a bit written off as she scheduled my next check up for 4-6 months out and wanted to just consult via telephone in the meantime. I informed her nurse or whoever it was that called me today that the new jerks in my torso are there and I wanted to add that to my chart and I am waiting for my neurologist to return my call regarding my concerns with taking the neurontin for this condition, I will mention that I have a new symptom.

I think she was less worried as it was focal and only in my foot, but now it is progressing and I'm petrified. If it gets worse or if there's something that is being missed.


Any suggestions on what other tests I should request?


Thank you for your help.

 

[masterjen]

I'm glad your current neurologist is at least wanting to maintain contact by phone even though your follow-up is 4-6 months away. This is a positive sign that she is not entirely dismissing you.
Requesting a referral to a movement disorders neurologist and/or neuromuscular neurologist are both good next-step options if you seem to be reaching a diagnostic dead-end with your current neurologist. I would ask this particular neurologist for the referral to this second neurologist; he/she will most likely be in the best position to recommend somebody and it is important to keep all your doctors involved.
A neuromuscular and/or movement disorders neurologist might request an EMG (muscle-nerve conduction tests) and may want to perform other anti-body blood tests depending on what his/her physical exam shows. And depending on the results of those tests, they may choose to do a muscle biopsy. But these things are a little further down the road than where you are at now, and may end up not even being necessary. Wait and see what your current neurologist has planned.
Did your general neurological exam reveal anything else enlightening, such as under- or over- reactive reflexes, peripheral neuropathy, poor balance . . . anything?

 

[lovemytiger]

Her exams all were "normal" , reflexes, balance, sensations etc and I am "healthy" by all accounts.

On my appointment last week Monday I believe, I actually came in with the random/sporadic nerve craziness that I sometimes experience in my hips/legs. It was lessening and had presented over the weekend. It feels sort of like I have a sunburn all over my leg, sometimes up into my pelvis/half of my privates, mostly on the outside and back and then down in my ankle. I also had a "painful" sensation when walking, sort of like when your foot is asleep and coming back but not fully back. "hurts" more when you lightly touch it, or clothing rubs. This happens from time to time and comes on out of no where then lessens over a few days and disappears.

I unfortunately do not journal all of these things, but I am going to make an effort now.

She just was like "oh sciatica" and didn't really make much of it. It was actually in my right leg and my jerks in my foot (I wan't having the torso jerks yet) and all the other crap I complain about is on the left side.

My new jerk, in my torso is on the right side, I am pulling in, kind of folding in half sideways, I've been doing it almost non stop now for several hours and my back is a bit sore. *pulls hair out*

I just worry that I am not advocating for myself strong enough at appointments. I can be pretty pleasant at my appointments and I think maybe I am not making it clear just how distressing everything is and that I really would like it to be explored thoroughly.

I think a brain mri should definitely be next, and soon, to just rule anything out there and I can stop wondering and worrying about it.

I don't want to just be left out here to deal for the next 4-6 months!! I'm so used to kind of just "dealing with" stuff and I don't make a big enough fuss, but this is soo distressing so I've got to make a bigger fuss!!

Thanks for taking the time to offer your opinions. I appreciate it.

 

[john1947]

newcomer

Hi, .I started having the jerks in October.It was shortly after i had a epidural shot for my back.The jerks started while motionless like sitting on the couch.Both arms with quick jerks.later i started having jerks while walking.Shoulders shrugs and sort of throwing me backwards.This has been going on since then but seems to remiss some and start up again.I also get a sharp pain in my buttock often before they start sometimes.lately Ive been getting them at night in bed,shrugs and leg jerks.
I also have Parkinson but this DX is rare and usually comes with dementia which I dont have .
I read a few of you have that pain also before the jerks and wondered if you ever found the cause.
Thanks so much for all your replys my doc says psychsogenic movement disorder which I disagree .Ive had no tests.
thanks
john

 

[lindsayschu2]

I have suffered these for the past year and a half. I can say for myself the things that have helped the most have been nutritional, mostly electolytes and vitamin B12 and B6. You can try signiificantly increasing your potassium through food--bananas and V8, both for example. If your magnesium is low, which it could be despite your blood test, your potassium and calcium would both be low no matter what you eat or take, so I would definitely still add in magnesium. Eat a diet rich in calcium as well. I'd suggest taking vitamin D3, and B12, plus maybe a B complex. I found by increasing D, all the electrolytes (magnesium by supplement and the rest through food), as well as vitamin B, I significantly reduced mine. I don't know what is causing yours--but I do know that IF you are low in D, any of the electrolytes, or B12 or B6, it can cause or make these worse, so if you make sure you are good on them all without going over, you can see if that is your issue or at least possibly help reduce them. Mine are not under full control but much, much better since I increased my nutritional balance. I hope you find the source of your issue!

 

[john1947]

Thanks so much for taking the time to reply.Ive heard many others mention about vtamins.What doctor would be best to figure this out a neurologist or a rheumatologist?

 

[Nakamova]

Best to start with the neurologist.

 

[john1947]

I have heard recently it's best to see a nerologist who specializes in epilesy for the video eeg.Something also about having it done at specialty centers
Do you think it makes much difference?
Thanks again for all your interest
john

 

[Nakamova]

Often larger epilepsy centers (called level 3 and level 4) will have more epilepsy specialists to choose from and a wider variety of treatment options. And they can have more sophisticated kinds of machines for tests. If you go this link http://www.naeclocator.org/locator/default.asp and type in you zip code, it will show you what epilepsy centers are located near you.

Even better is finding a neurologist you are comfortable with and confident in. Unfortunately, there's no definitive way to find one, but if you don't like the one you have, keep looking...