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    Smart drug trial

    Good evening all,

    Sorry I seem to have been bit absent recently but life has been really busy – Building works now seem to be almost finished bar a bit of wardrobes and carpeting plus whatever Madame wants to do the living room which we currently call the campground.

    I went into Southampton General on Friday for my "MOT" for the smart drug trial and I passed, leaving with my tincture of whatever I'm being given, be it an active drug or a placebo.

    I will try and keep you up-to-date as the dose gradually increases and whether whatever I'm taking has any effect
    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"

    #2
    Great to hear and best of luck to you 🤗😘😁😂xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      We will all be keen to hear how it all goes. I wish you better
      Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

      Comment


        #4
        Yes, good luck Andy, hope you tolerate whatever you're given. xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Waiting with great anticipation for a positive outcome Andy.
          I’m going to do this even if it kills me!

          Comment


            #6
            Hope it turns out a positive result.

            love and hugs Denise xxx

            Comment


              #7
              Great Andy. Lynne x
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

              Comment


                #8
                Good Afternoon,

                Given I have the packaging in front of me I thought I should let you know that the 2 drugs that make up the current runners and riders In the Smart trial are;

                trazodone hydrochloride
                memantine hydrochloride

                And of course……

                placebo oral solution
                Last edited by nunhead_man; 4 July 2021, 16:13. Reason: typo
                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"

                Comment


                  #9
                  nunhead_man interesting I work a lot with people diagnosed with dementia and memantine quite often prescribed.
                  It's good to hear details of trials. Good luck and thank God for people trying on behalf of us all.
                  We live in hope👍
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                  Comment


                    #10
                    Hi Linda,

                    Originally posted by LindaB View Post
                    nunhead_manpeople diagnosed with dementia and memantine quite often prescribed.
                    Thank you – I live in hope too and hope somebody has done their homework about how drug for dementia will help with MND

                    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"

                    Comment


                      #11
                      I have been on this trial for five weeks and I would advise that if you can be part of this trial ,then do it

                      Comment


                        #12
                        Redders239 A warm welcome to the forum.

                        Good to hear you were eligible to enrol on the Smart trial and went for it. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Thanks Ellie ,I am not new, just hardly post and had to re register. I have had mnd for 7 years. Can I thank you Ellie for all the advice you give on this forum ,you go above and beyond.

                          Comment


                            #14
                            Thanks Redders, and welcome back (thought I recognised you) - sure I've nothing better to be doing 😂😂
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Originally posted by Redders239 View Post
                              I have been on this trial for five weeks and I would advise that if you can be part of this trial ,then do it
                              Do feel you've benefitted ? That's great if so 👍
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                              Comment

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