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Thread: Hello to everybody

  1. #1
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    Hello to everybody

    Hi, I have been falling over for about 3 years, weak 3 fingers on my right hand and speach a bit slurred for 12 months or so. I had an mri and nerve/muscle tests a couple of months ago and last week was diagnosed with slow degeneration MND. The neurologist gave me Riluzone which I'm on my second day of and no sickness so far. I was scarred to death 2 weeks ago when MND was inferred but a bit better now that it's decided it's the slow type. I have enjoyed reading others posts and found them helpful, I'm a driving instructor still. Thanks all.
    Last edited by Lynne K; 18th November 2017 at 21:11.

  2. #2
    Forum Member Streetwise's Avatar
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    Welcome I'm an ex-carer of my mother who had a very fast progressing form of motor neurone disease
    One thing I will say ask for help, I didn't ask for help quickly enough ,you don't need to be stressed and receiving help takes a lot of stress off.
    If you think you don't need to do it rest! people in general get a lot of health problems because they don't rest.
    Can't tell you a lot about riluzole as my mother was prescribed it but when I saw the side-effects she decided not to take it .
    I'm autistic sorry about the grammar .
    Only learned i'm Autistic two years ago and I'm nearly 48 .

  3. #3
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    Thanks Streetwise. I have been taking Riluzole 2 days and no side effects so far. No problems about grammar, no need to apologise.

  4. #4
    Forum Member ccinjersey's Avatar
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    Welcome Lynne

    You found the right place for great advice, support, and knowledge from people that understand what you are your family are experiencing.
    Wishing you all the best.

    CCxx
    .

  5. #5
    Forum Member Barry52's Avatar
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    Hi Lynne and welcome.

    If like me you have a slow progression MND then you will carry on doing what comes natural to you and when you can’t you make adjustments and move on. Falls can be our worst experience so my advice is don’t be embarrassed by using a stick, crutch or walker. Prevention is better than cure if you break a bone.

    I’m not sure of the benefits you will get by taking riluzole and it seems like your neurologist has taken the standard default action when diagnosing MND. I say this after much discussion with my neurologist.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  6. #6
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    Hi Lynne,
    Welcome to the forum and I'm so glad you're being positive. It's great that you are carrying on with your job. As Barry said, don't be afraid to use a walking aid - I'm speaking from experience now and I have a pink cast on my right wrist!
    Take care,
    Bern x

  7. #7
    Forum Member Ellie's Avatar
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    Hi Lynne and welcome, but sorry you've had to join us.

    Good to hear you have a slow form of MND. As others have said, stay safe! A bad fall could be a real set back for you

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  8. #8
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Bern View Post
    I have a pink cast

    Ooh, get you Diva-girl. No plain old white for you x
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  9. #9
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    Yeah - bright pink. I'd just been told I had bone thinning prior to going into the plaster room and so I thought what the heck .......I'm having pink. Think my husband thought I'd finally flipped!! X

  10. #10
    Forum Member Terry's Avatar
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    Hi Lynne and welcome to the forum;

    Sorry to hear of your recent worries and diagnoses but you seem to be on the right track and are now moving forward.

    Hope you can keep your job running for a while yet as a driving instructor.

    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 keeps 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.

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