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    #1

    Hello there

    Hi everyone,

    Just to say a quick hello. I have had a probably MND diagnosis after physical examination (left hand weakness and wasting) and an EMG.
    I am due to have another EMG test in December, plus some additional blood testing for Kennedy's disease.

    Of course, I still have hope that I won't have MND, but I have twitching and muscle weaknesses in the left (and now a bit right arm) which seem to be classic symptoms. Hence I am prepared that the initial diagnosis will be confirmed.

    I know there are a few 'types' of MND. Is the 'type' something that the doctor would make a conclusion on in due course as further symptoms/speed arise?
    Views welcome!.

    Another question- has anyone got any thoughts on clinical trails and what to consider in terms of trying to join one.?(if not for me then for others)

    At the moment my speech and lower body are behaving itself, but am I right its only a matter of time when I will have problems with these? Can you for example maintain your speech whilst other bits of your body/muscles stop working? Appreciate if anyone has a view.

    Finally I am also very sad to here of Doddie Wear's death. What an amazing man and example.

    Thanks in advance

    Ben



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    • 👍 1
    #2
    Hi

    The one certainty with MND is that everyone's progression is different. Not everyone is affected in all parts of the body. Some people maintain a level of mobility whilst others dont. Some people continue to be able to swallow and eat and speak and others don't.

    My advice, if you get the diagnosis that noone wants is to prepare for the worst when advised by a professional. Ie do voice banking while your voice is good. Accept the offer of a wheelchair when offered and accept advice and support from the various specialist's.

    I hope you haven't got MND. Wishing you luck.
    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

    Sense of humour intact throughout.

    Sadly passed away peacefully 2/9/22
    • 👍 3

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      #3
      My husband was singing and talking the morning he died and was still able to eat. He was walking in July this year though we had a wheelchair for backup. It's hard to say how things will progress. I just hope you don't get to join our club though it has been nice meeting you.

      Love and hugs
      Xxx
      when i can think of something profound i will update this.
      • 👍 1

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        #4
        Many thanks MMG and Denise. Yes- thats what I hear. MND has common threads but affects each person differently and the journey is different. My current diagnosis has now changed to 'ALS' and I am awaiting some follow up tests to confirm finally. But yes- I expect will be confirmed. Wishing you the best. Ben xx

        Comment

          #5
          Ben what follow up tests are you having because I am shocked they would give u a diagnosis of als unless they were 100% confident it was as it wouldn't be said lightly. I hope they might explore other options then if its not definite?
          Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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            #6
            Ben glad you’ve come to the forum but hope you won’t need to in the future. Wishing you the best of luck with further appointments.xx

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