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Knitting Equals Pleasure, Despite ME/CFS
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Myoclonus.

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by justy, Jul 9, 2011.

  1. justy

    justy Senior Member

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    Hi, i have been experiencing Strong muscle jerks for about the past 6 months, at one point it went away and now is back. It has taken me a long time to work out what it is, but after seeing some videos on you tube of other M.E sufferers i can see that it is the same as what they call myoclonus. I have it especially after exertion -although not until i lay or sit down and it included at first just the legs, then progressed to the legs and arms, now i get the jerks in my legs, arms, neck head and torso (spine?) often involving multiple muscle groups. It goes on for a while and then as i rest up it stops.

    Does anyone know what causes this, is it neurological? I also have an over active startle reflex and just read that this can be linked to myoclonus. I also wonder if it is a sign of progression of the illness and if anyone who has documented lesions of the brain suffers from this -would it show up on a brain scan and would a neurologist in the UK take this seriously (especially if i didnt mention the M.E dx)
    Thanks, Justy.
     
  2. Wonko

    Wonko Senior Member

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    I've had the same thing for years, since about '94, varying in frequency from almost continous (every few minutes) to only a few instances a day. It's been investigated and I've been told it's definately not myclonic seizures, but they had no idea what was causing it,and I was then told to to live with it. When I asked for clarification I was told they couldnt help and to get out (of the consultants surgery).

    My GP then refered me to a psychiatrist who prounced me perfectly normal and well adjusted (ie not neurotic), I was then refered to a psychologist who informed me that as far as she didnt know what was wrong but organic damage couldnt be ruled out, and wouldnt be picked up by the broad brush tests the neurologist had done (long time ago but thats pretty much the gist of what she said). Due to NHS waiting times and the fact that no progress was being made I dropped the matter rather than go through the same mill again.

    This was several years before my M.E. diagnosis.

    The NHS might be better now, I dont know, I have as little to do with them as possible.
     
    justy likes this.
  3. lucy

    lucy Senior Member

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    I know what you are talking about, but I do not know the reasons why I get it or what to do about it. Since half a year ago I was having more and more leg kicks (totally the same as hypnic jerks, but during the day), then the "no" movement of the head, then one day my arm was jumping uncontrollably every 2 secs. The diagnosis of neurologist was "possible anxiety" (so no need for a brain scan). This is in Italy.

    I am not so worried about the leg myoclonus, as the internet says it can be benign, moreover, it is quite normal to get them before sleep. I was thinking -maybe my body wants to relax and sleep, just in the middle of the day, as it is tired. (very very medical assumption :D )

    I was quite worried about the arm jumps. In fact, those arm jumps (with some of the muscles contracting, others relaxing) started after my lunch. No body position or massage would stop it. The funny thing, it stopped next day after lunch ( and the neurologist was provided with those details). If you read possible causes of uncontrollable movements, one of about 7 is metabolic (another one is psychological), so I personally give a minus to that neurologist for not even considering metabolic reason. I had another episode several weeks later of fasciculations for one day, and now, several months later I sometimes (like 3 times per day) have a "yes" movement of the head, sometimes my head knocks back, and I still have milder version of the arm twisting.

    In any case, everywhere only my right side was involved - I also had a very small pupil in the right eye for about 6 months, I had trigeminal nerve pain on the right side, only the right leg was kicking, and only the right arm was jumping and is still twisting sometimes. When my head decides to nod yes, it even nods only to the right side by 30 degrees. So, the scan would show sth in the left side? And, 90 percent of my gray hair is on the left side.

    Anyways, my personal opinion is - if such things did never happen to me when I had much much more stress, both physical and mental, and now it starts happening out of the blue (the blue where I am sick with something like ME), doctors should want to see scans. At least I would like to see mine. Am I now hypochondriac in their eyes, I wonder?
     
  4. xchocoholic

    xchocoholic Senior Member

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    I use Theanine for this when it happens. I took Klonopin for years but prefer a holistic option without all the side affects ... I only get nocturnal myoclonus and so far it appears that this is a reaction I get from even minute amounts of gluten. Dogtorj has a theory that seizures, including myoclonus, can be from glutamates .. these include gluten, dairy, soy, corn ... tc ... x
     
    merylg likes this.
  5. taniaaust1

    taniaaust1

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    Scans may not pick up any abnormalities, my MRIs didnt show up anything which stood out to doctors when I had severe neurological symptoms (my EEGs thou always show up ME abnormalities).

    I was diagnosed by neurologist who was observing me with having rhythmatic monoclonus (as I'd do into bouts of it where it would occur over and over in a short space of time in like a pattern of beats).

    Along with getting body part jerks which were very often occuring (every few minutes, i'd get a bout of those).... at times I also used to get huge full body jerks (which happened differently to the rhythmatic stuff and much more severe so I dont know if they can be called monoclonus). These massive single massive jerks which could throw my body from sitting to face down onto floor.. with these a spontanous loud noise would also issue from my mouth.

    Its all part of the parcel of having the neurological symptoms ME.

    When I used to get the monoclonus I had also hyperreactive leg flexes (a doctor on testing my knee one almost ended up being kicked in face) and an extreme startle reflex and also had unequal pupils happening.

    I still do have bad startle reflex and also get on rare occassions what appears to be seizures nowdays and other times tremors at times but the monoclonus is gone. My occcassional single full body jerk is also now gone. (so whatever causes this neurologically, doesnt necessarily cause permanent damage. My constant severe neuro issues lasted for 18-24mths).

    My specialist has me on supplements to help protect my nervous system.
    .......

    I think its interesting that a few here say they had jerking forward with their head as in yes.... my head jerks didnt happen forwards but violently happened to one side (head would slam left)
     
  6. Ambivalent

    Ambivalent

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    HI
    I am new to this site. I have these Hypnic jerk symptoms so bad now. Started after large doses of Magnesium.
    Actually many years ago after stopping an SSRI but the Sx went away, Now they are worse than ever.
    Any suggestions on how to stop them without medication? I am hardly getting any sleep. My neck snaps forward
    and legs shoot out. Its terrible. Two months of this.
     
  7. justy

    justy Senior Member

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    Hi @Ambivalent - mine went away not long after posting and returned last year - now they are large body jerks - my mum says it looks as though I have suddenly started waving at someone in the distance - usually it is my left ar and leg, but strangely if I hold the arm down the leg only goes. If I am laying on the left side it does it on the right, but this is unusual. Mine look like weird spastic movements - only during the day and nw not just when resting but often sitting in my wheelchair when we go out.

    I have noticed that diazepam does npt stop them, but an increase in anxiety definitely makes them worse. My M.E doctor thinks they are small seizures, and sometimes they can happen all day long - other days none at all. He says it is caused by inflammation in the brain caused by bacterial infections.
     
    merylg likes this.
  8. xchocoholic

    xchocoholic Senior Member

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    This stopped working for me or didn't work as well for myoclonus as Klonopin. It's funny re-reading my posts from 3 years ago. Lol.
    We certainly can't count on all supps or meds working permanently.

    Tc .. x
     

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