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Hi. Im terrified

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    Hi. Im terrified

    Good afternoon folks. I have read some of your stories which I have to say has increased my worries!!!

    Being a 'worrier' by nature, starting to look up things online probably is not the wisest thing for me to do. I have self diagnosed myself already I think!

    For around 2 weeks, I have felt very weak. The easiest way to describe it is that both my feet, legs and hands all 'feel' weak but they seem to be ok when I actually go to do something normal, grip with hands, kick a ball etc.

    I went to my doctor with my concerns. She was really good and done an evaluation making me do a few excercises with my hands etc, checking my reflexes, strength, resistance etc. She checked the part of my hand between my thumb and the next finger which I presume was to check for any wasting as that seems to be a potential early sign in some people. A few days later, I had a meltdown at work after some close friends noticed I wasn't myself and of course all my worries surfaced.

    I had to call the doctor again who was on holiday. Another called me back and basically told me that the symptoms I had would not be MND as it would be more subtle and concentrate on one area initially but I am unsure if this is correct.

    I am also experiencing dizziness which is coming and going and although this might not be detectable to others visibly, I feel lightheaded sometimes when walking the corridors in work. Additionally i have had muscle twitches in multiple locations but these seem to be worse when my angst is peaking.

    I have become a bit obsessive tbh and have been throwing things in the air to see if I can catch them regularly, testing both hands and its all normal and catching things. I've even been outside in the garden checking I can still do keepy ups with a football which I have always been able to do and again I am doing that normally.

    I am feeling tired almost permanently and in my 40's with two under 2's that's no use. I am sorry to sound pathetic but I have been upset on occasion when looking at my wee boys, totally overcome with anxiety and fear that this could be the initial phase of this dreadful disease beginning to manifest.

    Please let me know if this mirrors anyones initial problems as I am a nervous wreck and its beginning to rule my life.

    Thank you and sorry if this sounds melodramatic.


    No, that's not how MND presents.

    Try hard to believe your GP and her colleague.

    I am sorry this is causing you anxiety, which in itself will only increase your twitches, as you have discovered. Twitching on their own mean absolutely nothing, in fact most people will have bouts of benign twitching at some stage in their lives. You have had a completely normal clinical exam.

    Anxiety is very real and debilitating and can ruin lives - I hope you can stop all the self-testing, which is impossible to do subjectively anyway, and if you think it'd help, go back to your good GP and talk through all of your symptoms again with her and get resolution.

    I wish you all the best.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


      Hi Anxious and welcome to the forum,

      Sorry to hear of your problems and anxiety.

      It really does not sound like Mnd. Your issues seem to be to sudden and probably wrong for Mnd.

      Did you have any problems before two weeks ago?

      Balance and moving rapidly normally comes along with weakness.

      I don't think dizziness is associated with Mnd either.

      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.


        Thank you Terry and Ellie. I haven't had any problems before then. Thank you so much for your reassuring replies. It didn't help to arrive at work this morning having been on holiday for a week to be told, 'you've lost weight', (this would normally be a welcome comment!) by a couple of people.

        The angst of this worry has resulted in me going off my food so that's not a surprise.

        Can I just say that I have read quite a few threads on here recently in my more paranoid moments and the warmth and positivity from both of you has shone through which I think is utterly incredible in the face of such adversity.

        You are both clearly very brave special people and I wish you both all the luck in the world. Even in the last hour I have felt better mentally and less stressed and I cannot thank you two enough.

        Thanks again.


          Thank you for your kind words.

          Try and put yourself first for a while - eat well, stay hydrated, get proper sleep and exercise (even a walk in the park)

          Treat yourself - it doesn't have to be expensive, just do something you enjoy.

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


            no it doesnt sound like my mam at all ,you sound run down not a surprise