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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
    Hi Jacqui,

    Strange you didn't get a reply through FB. You can try emailing Barbara Byer on [email protected] 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 Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


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

      Comment


        #4
        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
        I’m going to do this even if it kills me!

        Comment


          #5
          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.

          Comment


            #6
            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’m going to do this even if it kills me!

            Comment


              #7
              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 don’t believe it!!! Barry I can’t believe you are still breaking the “no falls allowed “ rule by not using your walker. You will no doubt get another telling off - only because we care and don’t like to see anybody take unnecessary risks. Please be careful.

              Comment


                #8
                Well, I've given up scolding Barry for falling over He's just a scoundrel...
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  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
                  I’m going to do this even if it kills me!

                  Comment


                    #10
                    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. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

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