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Muscle Loss

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    Muscle Loss

    Hello All,

    I was wondering about muscle loss. I have noticed muscle loss in my arms and hands. I am still waiting on neurology results and have not seen the neurologist since noticing what I believe to be muscle loss. I hope it doesn't cause offence by asking but I was wondering how people noticed their muscle loss, if any with MND. Did the muscle stop working and then occurred or the other way around or both.


    Daniel, yes agree there is muscle loss. I formally diagnosed with ALS MND in May 2014 just two days after 65th birthday. Previously always kept myself fit had played lots rugby and had pain in left hip and always assumed to long in front row. I now cannot walk and talk and left arm and left leg not working that well, still enough use for grabbing and being lifted up on sit to stand hoist. I was about 15.8 stone but after 5yrs now 13.8 and muscle loss in left arm left leg. Can still eat as long food mashed up but had food peg fitted 3yrs ago and hardly use it.
    Best wishes John


      Daniel. John gave a good answer but I thought that I'd add a bit. My right hand fingers are weak and losing dexterity. You can see the loss of muscle in this hand clearly. If I put my hands alongside one another they look like they belong to 2 people. The right is much thinner and gangly looking. The left looks normal. Lynne
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.


        Hi Daniel

        Originally posted by Daniel View Post
        Did the muscle stop working and then occurred or the other way around or both.
        I am not sure the others have answered your last question and I was not sure if that was important?

        In my case I lose the function and then lose the muscle.

        So in my case, my left hand stop working properly, about 3 years ago with the thumb and forefinger grip ceasing to work and then gradually the muscles in my forearm and then upper arm have wasted away as a course with no nerve feed muscles simply wither away

        I hope you get your diagnosis soon. And of course always come back here for support




        ​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"


          Hi Daniel

          That's a perfectly reasonable question - doesn't cause offence in the slightest.

          My MND started with my left lower limb - foot drop - which is now completely paralysed. Muscle wastage followed loss of function, rather than the other way round. This sort of makes sense: the nerves die, they don't activate the muscles, the muscles aren't used, so they waste away.

          Diagnosed April 2017


            Hi Daniel,

            I was diagnosed in November 2019 and lost the ability to walk less than four weeks later. Three months on and I have noticed a considerable loss of muscle in my thighs.

            Trying to keep positive, but not always managing.