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Thread: Hello and I need advice please

  1. #11
    Forum Member nunhead_man's Avatar
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    Good evening Hettie

    I have nothing practical to add to what is being suggested above just wanted to offer my welcome to the forum - which has may already been said is not a place anybody really wants to be.

    I hope you can do some practical things to make yourself more comfortable - my view is the more comfortable I am the longer I will be able to go on
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

  2. #12
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    Hello Andy, thanks for your reply, I am struggling as to whether to take the riluzole or not because the tablets make me feel so weak and light headed but if i don't take them my legs start to buckle underneath me and i fall down.
    I feel as though I can't win.
    I have a walker but I still feel the weakness in my legs and I have leave before my legs give way

    regards,

    Hettie

  3. #13
    Forum Member nunhead_man's Avatar
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    Good morning Hettie

    Quote Originally Posted by hettie View Post
    I am struggling as to whether to take the riluzole or not because the tablets make me feel so weak and light headed but if i don't take them my legs start to buckle underneath me and i fall down
    I hear what you say but I'm interested in the side effects you attribute to riluzole - partly because I get no such side effects which makes me wonder if something else is going on?

    Perhaps somebody who knows more about these things will be along in a minute to say something.

    About walking aids et cetera I think people should use what they need and not worry about the implications - a fall or a trip might suddenly make you much worse.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

  4. #14
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Hello Hettie,

    The patient information leaflet about Riluzole lists possible side effects and recommends we speak to our Doctor if we experience any symptoms that could be side effects.

    http://https://www.medicines.org.uk/emc/files/pil.8572.pdf

    Best wishes
    Kayleigh

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