.MND Symptom

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  • Lily4
    Forum Member
    • May 2019
    • 4

    .MND Symptom

    I have had fasciculations in hands for about 4 yrs. For that last two or so I have had trembling/shaking mostly in hands/fingers but sometime all over body if stressed or just odd incidents around the mouth or elsewhere in body. I saw a neurologist 4 years ago but he was not concerned. I have lost about 6 kilos in a few months without trying and my hands look as if they are "losing weight" being very wrinkled etc. I also drop things and don 't have much strength in my hands. However I am 72 and have osteoarthritis with some fingers nobbled, joints locked and pain. My question is one I can't find an answer to anywhere and I don't want to go to the GP yet without any other startling symptoms appearing . If I am sitting with my hands resting an odd finger or thumb will either tremble rapidly or what is most disconcerting rise very very slowly, my forearm could rise or fall again slowly, or it could be a foot or a toe this happens to. My head does not tremble. It is these slow involuntary movements I find troubling, my hand has just curled itself up. I have looked up symptoms of Parkinsons,MND, essential tremors, dystonia and MS but nowhere describes these slow involuntary movements. It's as if I' m a puppet whose strings are being pulled in slow motion. Have you ever heard of such movements either in relation to MND or anything else come to that. Thankyou.
  • Terry
    Forum Member
    • May 2012
    • 1917

    #2
    Hi Lily and welcome to the forum,

    They could all be symptoms of Mnd but the order and the time scale suggests not.

    I would see your doctor and a neurologist again.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

    Comment

    • Gillette
      Forum Member
      • Mar 2019
      • 710

      #3
      Hi Lily and welcome to the forum.

      Reading your symptoms makes me think the same as Terry: you should see your GP and a neurologist asap.
      Dina

      Trying to keep positive, but not always managing.

      Comment

      • Lynne K
        Forum Member
        • Nov 2017
        • 2614

        #4
        Hi Lily, I agree with Terry also. Go back to your GP and get a referral to a Neurologist, a different one if you aren't happy with the first one. Whatever your symptoms are caused by needs investigating. Good luck. 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.

        Comment

        • Lily4
          Forum Member
          • May 2019
          • 4

          #5
          Thanks so much to Lynne, Gillette and Terry for your replies. I am reluctant to go to the GP yet because I believe they will fob me off as happened the first time when I had to insist on seeing a Neurologist who couldn't see anything amiss. I will go one of these days but unless something dramatic happens like falling over I don't think anybody is going to be interested. Diagnosis with so many of these horrible illnesses seems to be so long and drawn out and often inconclusive. I just would love (although obviously I don't want anybody to be ill) to find someone else who feels they are being manipulated, as I said, like a puppet in slow motion! Thanks again.

          Comment

          • Ellie
            Forum Member
            • Oct 2012
            • 12572

            #6
            Hi Lily,

            As you have described it, that does not fit an MND symptom.

            The best way to find out what might be causing it is to see your GP and be seen face-to-face, then take it from there.

            In the meantime, make sure you are well hydrated and nourished and getting enough sleep.

            Take care.

            Love Ellie.
            ​Diagnosed 2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
            .

            Comment

            • Sheila
              Forum Member
              • Feb 2019
              • 299

              #7
              Hi Lily and welcome! I was diagnosed with osteoporosis 2 years ago. Last year I had problems with my hands, locking and wasting. I was told osteoarthritis! I kept going back till they sent me to a neurologist. I was then diagnosed with MND. I would go back to GP! you are not wasting their time. They get paid enough!!!

              Best wishes Sheila

              Comment

              • Lily4
                Forum Member
                • May 2019
                • 4

                #8
                To all who replied to my original thread thank you. I did see the neurologist and had an MRI of my brain which he told me today is normal for my age. As 4 years ago he says I have Benign Essential tremor or dystonic tremor which I have to accept. It's not bad enough for me to want to take any medication. One thing I stupidly forgot is to ask him again was about the involuntary slow limb movements or my body drifting back or forward when standing still. If I stand still my arms (left first) will drift up or if held at shoulder level out in front they will drift to the side but with no pronation the latter meaning there could be neuron damage. Anyway it seems there is no real explanation and I will try to ignore my floating limbs. I am of course grateful not to have brain damage and wish you all well in your battle with MND. It is a cruel condition and I hope research continues apace and you get continued support from the medic and the forum members. Thanks and best wishes Lily.

                Comment

                • Lynne K
                  Forum Member
                  • Nov 2017
                  • 2614

                  #9
                  Thanks for the update Lily. 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.

                  Comment

                  • Terry
                    Forum Member
                    • May 2012
                    • 1917

                    #10
                    Hi Lily,

                    Yes, shame you didn't mention your floating limbs, I have never heard of that before and maybe Google it. Always right a list of things that you want to say or ask when you see a doctor etc.

                    Best wishes, Terry
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                    Comment

                    • Lily4
                      Forum Member
                      • May 2019
                      • 4

                      #11
                      Hi Terry, thanks, I did tell him at the first appointment when I asked for a brain scan, along with a list of other things and although he said he had never seen it before he was not interested. It was at the second appointment after the scan that I forgot to ask about it again. I've googled for hours on end but can't find any mention of drifting apart from when it is accompanied by pronation of the wrist. Perhaps I'll take off one day! Best wishes Lily

                      Comment

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