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    Myoclonus jerks

    Hi, has anyone experienced myoclonic seizures related to their MS? Last week I had an acute onset of crazy symptoms. My shoulders starting shrugging uncontrollably, eyes blinking, head jerking, and arms flapping everywhere. Never heard of this with MS.
    Got a course of oral steroids which didn't help much. Now heading into iv steroids. MD is increasing my neurontin for it but just making me feel off balance and tired not getting rid of seizures.
    Now it's happening on all my limbs as well as having trouble talking. Anyone have this happen? What did they say it was? How was it treated and did it go away?
    Sorry for all the questions. Just really scared right now. Things just keep getting worse.

    #2
    I Feel Like a Puppet

    I have periods of jerkiness. It feels like I am a puppet and the person holding the strings doesn't know what they are doing. It usually feels like gravity pulling me a certain way then I jerk back. It is embarrassing for me but I just try to ignore it. I would like to know if there are more people out there who have this too.

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      #3
      I have a lot of spasms, some painful. My doctor mentioned Dystonia and put me on a medicine called keppra which is often used for epilepsy. I'm not sure what the diagnosis is but taking baclofen, keppra and flexeril as needed has helped.

      I just had a muscle test (emg) haven't gotten the result back yet, except to say that the (big, nastier stuff had been ruled out) I have some back and neck issues, diagnosed with carpal tunnel, cubital tunnel, etc. trying to figure out if this stuff is MS, mechanical from neck or if surgery would help.

      I don't have any concrete answers for you, just wanted to let you know that I understand your struggle. Keep pushing for answers.

      I will be praying for you! They do have medications to help with spasms.

      My doctor also suggested that I take Magnesium, b-complex and drink tonic water each night as these things help with muscle function and are not toxic.

      Praying for answers and relief!

      Comment


        #4
        Thanks so much for your responses. I've been so discouraged. Out of work six weeks now. On my third anti seizure med (take all 3) and still having some seizure activity although much better. Mine is myoclonic seizures and chore inform movements. Came on very acutely.

        Mostly my right arm just rapidly moving/ jerking without being able to control it for several seconds. But at its worst my eyes are blinking, head jerking back and forth, shoulders shrugging, arms flapping, and legs kicking all at the same time. Each can happen on its own too. Two courses of steroids and now keep adding meds. Can't take Ampyra or Modafinil any more because they could contribute to the seizure activity.

        So all 3 anti seizure meds are sedating and Ampyra and Modafinil help me keep moving through the day do foible whammy. Don't know if I'll ever get back to work now. Can't care for patients with my arm flapping around

        Anyway, I so appreciate your responses and support. They mean so much to me.

        Comment


          #5
          Jerks

          Originally posted by AriD View Post
          Hi, has anyone experienced myoclonic seizures related to their MS? Last week I had an acute onset of crazy symptoms. My shoulders starting shrugging uncontrollably, eyes blinking, head jerking, and arms flapping everywhere. Never heard of this with MS.
          Got a course of oral steroids which didn't help much. Now heading into iv steroids. MD is increasing my neurontin for it but just making me feel off balance and tired not getting rid of seizures.
          Now it's happening on all my limbs as well as having trouble talking. Anyone have this happen? What did they say it was? How was it treated and did it go away?
          Sorry for all the questions. Just really scared right now. Things just keep getting worse.
          My experience with this is when I type, my right hand jerks and it types different letters, or when I play on my I Pad, it does the same thing and makes me move in different places. I never knew what that was until now. I discussed it with my MS doctor before he left but I don't remember what he said or told me to do. So confused.

          Comment


            #6
            It is very confusing. Mine involves crazy flapping of my arms as well as all the other things I mentioned. But with my arms the have this weird electrical sensation in them much like the parathesias I get in my legs. Except it slowly builds up until my arm just jerks up and may slap my face rapidly many times or scratch my head rapidly. So weird. What did your neurologist say or recommend.

            Comment


              #7
              Originally posted by AriD View Post
              It is very confusing. Mine involves crazy flapping of my arms as well as all the other things I mentioned. But with my arms the have this weird electrical sensation in them much like the parathesias I get in my legs. Except it slowly builds up until my arm just jerks up and may slap my face rapidly many times or scratch my head rapidly. So weird. What did your neurologist say or recommend.
              It sounds like some sort of dystonia or movement disorder. There are neuros that specialize in movement disorders. Did you have an EEG to diagnose seizure activity?

              Comment


                #8
                No EEG. Don't know why. My doctor said she was ordering one then just decided to treat the movements. So tripled my neurontin-no change, gave me two courses of high dose steroids in two weeks which was awful, added clonazapam-no change, then added tegretol and they finally stopped.

                Two weeks later I had a severe allergic reaction to the tegretol and wound up in the hospital for a week--high fevers, elevated liver function labs, decreased hematocrit, severe leg pain, etc.

                Now out of hospital, on neurontin and clonazapam, completely deconditioned, weak, and out of work eight weeks so far. Having VNA, PT, and OT to get back on my feet. So far no seizures, but today started having the electric tingling in my right arm again that preceded the myoclonic seizures/choreiform movements.

                So discouraged. It's all too much.

                Comment


                  #9
                  I have been dealing with clonus for about 3 years now. Fortunately it doesn't rear is little head on a regular basis. I happens mostly when I ride a bicycle. My right leg jumps as I pedal. Quite annoying once you think about it. Anyone else had issues with bike riding?
                  DX 11/2014
                  Plegridy -1/2015
                  Gilenya - 8/2017

                  Comment


                    #10
                    Originally posted by TravisT View Post
                    I have been dealing with clonus for about 3 years now. Fortunately it doesn't rear is little head on a regular basis. I happens mostly when I ride a bicycle. My right leg jumps as I pedal. Quite annoying once you think about it. Anyone else had issues with bike riding?
                    Hi TravisT

                    I was still able to ride my bike for a few years after MS dx (absolutely loved bike riding!).

                    Then gradually over time, after riding for about 30 minutes or so, spasticity would overtake my right leg, and it would fly off the pedal and the whole leg would stick straight out, stiff as a board. It would happen so quickly and unexpectedly.

                    Very awkwardly, I would have to stop and rest until my leg loosened up enough to bend it and to be able to put my foot back on the pedal in order to ride back home.

                    Have fun biking and be careful.

                    Take Care
                    PPMS for 26 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      lower leg jerks

                      I have had lower legs jerks at the moment of falling asleep. This has been going on almost 20 years - before I was diagnosed with MS.
                      I was put on clonazapam initially which worked great more a few years. Baclofen was added with good results. A few months ago, I had the leg jerks more often at night and also when awake. The jerks have been stronger. A few times I was standing and thought that I might fall.
                      I am now off the clonazapam and now on Horizant (long acting gabapentin) and Neupro.
                      I'm still leg jerks! In addition I can't fall asleep until 3am (side effect of Horizant?)

                      Anyone have anything to offer?

                      I know that this is not nearly as bad as your problems. I hope that you have had resolution to your issues and back at work.
                      What's your update?

                      Comment


                        #12
                        I took Horizon for a couple of years for RLS and deep sleep is one of the side effects which worked great for me except the sleep did not set in until 2 or 3am and it did not remove the cramps/spasms sufficient to fall sleep on my own, but when finally asleep I would sleep until 10am without it I would not sleep at all. Horizon (breaks down into Gabapentin in the colon) does not keep you up if anything it makes you sleep and drowsy sometimes into the next day. It bypasses the liver so is much more efficient than straight Gabapentin.


                        But the last year I have replaced it with cannabis oil which works like a charm 80% CBD abd 20% THC. It took me awhile to find the right product and mix and I found that smoking made my cramps worse and I suspect it was due to polluted flower and with the oils I have made sure only to get organic lab tested (for no heavy metals, miracle grow and all the other crap that seems to end up in it when growers want to grow/harvest fast and make a quick buck).

                        Good luck. I have not tried Lyrica, but am told that works very well too and even promotes sleep, that will be my next try if the Cannabis stops working or for drug holiday.

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