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Fasciculations": how long have you had them without muscle or strength loss?

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    Fasciculations": how long have you had them without muscle or strength loss?

    Hi all.
    If i didn't have fasciculations i could literally forget i have MND ( occasionally). My main mental torment personallly is the worry of when that next muscle is going to waste and the strength starts to go. I was used in a study at Kings College recently where they are looking deeply(ultra scan and skinpads) at the nature and role of fasciculations. Some say it has a direct relation to the speed of your disease, others disagree.
    I certainly have had pretty active fasciculations in my right pectoral for approaching 2 years now with no muscle or strength loss. My right arm probably was around the same timespan(2 years) before it went. The left is weakening now.
    I have slight fasciculations in my legs, more right than left but not crazy, so am hoping i've got years still in the legs!?
    Has anyone else experienced years of fasciculations without any losses?

    Good morning John

    Generally speaking I believe that if you have a diagnosis of MND that fascisculations indicate that a particular muscle is on its way out although there appears to be no way to predict how long for circulations might go on for before that muscle stops working.

    In my case the main fasciculations I have are in my left and right biceps where both arms are decaying slowly and have been over the last five years.

    Everybody's progression goes at a different speed and a different selection of muscles get lost so I'm not sure how much good my answer is except perhaps to set a marker for others to respond to.


    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"


      John. The MND onward issue varies to all of us. Me formally diagnosed May 2014 ALS MND. My onfall did start a year before I pain in left hip. Now all down left side in left arm and cannot walk and talk. I have peg food a bit but can still eat if food mashed up. My soliva bad. I sit in wheelchair all day. I am hoisted in out bed with sit stand hoist
      Emotional level high when listening my favourite music
      Hope everything ok for you.
      Best wishes John


        Yes I had fasciculations for years in both legs. However it is Progressive Bulbar Palsy that was diagnosed in Jan 2018 and to date I have had no problems with loss of leg or arm mobility.