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Thread: Nuedexta

  1. #1
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    Nuedexta

    Hi Guys,

    I wonder if you can help. My MND Consultant has advised that I might benefit from Nuedexta, however this is not available in the UK. He has advised I contact ALS Worldwide. Unfortunately the contact form does not work on their website, and although I have messaged them through Facebook I have not had an answer. Does anybody have experience in obtaining Nuedexta and does anyone have a contact email address with ALS Worldwide.

    With many thanks

    Jacqui

  2. #2
    Forum Member Ellie's Avatar
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    Hi Jacqui,

    Strange you didn't get a reply through FB. You can try emailing Barbara Byer on barbyer@alsworldwide.org as she is mentioned on their website as having helped other Europeans get generic Nuedexta from the US.

    I'm nearly sure Barry here tried it for a while, with ALS Worldwide's help - hopefully he'll post soon.

    Good luck.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
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    Thanks very much Ellie, perhaps Covid is having an impact on them.

  4. #4
    Forum Member Barry52's Avatar
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    Hello Jacqui,

    Ellie is indeed correct to recall that I tried Nuedexta. I had a video call with Barbara Buyer who arranged supply of the generic form of the drug. A 2 month supply cost me approximately $175 after shipping and import duty. I took the drug for around 2 weeks but I found it was affecting my balance so I stopped taking it and put it down to an expensive mistake. This happened around 3 years ago and my consultant was aware.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  5. #5
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    Hi Barry,

    Thanks very much for the info. Can I ask did you have it for lability of mood and if so did it have any affect on it.

  6. #6
    Forum Member Barry52's Avatar
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    Hi Jacqui,

    I already take citalopram which has some benefits with lability and mood for me. I had hoped that nuedexta would improve my speech as reported by some users but the trade off affecting my balance was not worth it. Having said this, 3 years on and I fall over if I am not using my walker. I still count myself fortunate that I am able to adapt and use aids to to manage life with disabilities.

    I hope you find something to improve your situation .

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  7. #7
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    Quote Originally Posted by Barry52 View Post
    Hi Jacqui,

    I already take citalopram which has some benefits with lability and mood for me. I had hoped that nuedexta would improve my speech as reported by some users but the trade off affecting my balance was not worth it. Having said this, 3 years on and I fall over if I am not using my walker. I still count myself fortunate that I am able to adapt and use aids to to manage life with disabilities.

    I hope you find something to improve your situation .

    Best wishes,
    Barry
    I donít believe it!!! Barry I canít believe you are still breaking the ďno falls allowed ď rule by not using your walker. You will no doubt get another telling off - only because we care and donít like to see anybody take unnecessary risks. Please be careful.

  8. #8
    Forum Member Ellie's Avatar
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    Well, I've given up scolding Barry for falling over He's just a scoundrel...
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
    Forum Member Barry52's Avatar
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    Okay ladies, guilty as found. I do use my walker everywhere but I have to let go occasionally and this is my downfall (probably wrong choice of word).

    Love and hugs,

    Barry x
    Iím going to do this even if it kills me!

  10. #10
    Forum Member nunhead_man's Avatar
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    I have to say I'm also guilty as charged in the sense that as my grip weakens I continue to try to do things I used to do where part of my brain tells me I've no longer got the ability to do it - luckily no major disasters so far but sure as eggs is eggs at some time I'm going to try and pick up a piece of expensive crystal above my head with the consequent loss of it as it slips through my fingers
    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"

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