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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 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"

                    Comment

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