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    Edinburgh Smart

    I was offered the chance to participate in a trial of Parkinson and Alzheimers drugs recently but after a discussion on if the trial proved successful , would I be given it to continue. Answer was no and told it takes years to before it can be licensed and other hurdles. A bit disappointed to let my body go through the side effects of these drugs and the constant hospital visits and blood tests , I am under the impression all previous jumping up and down about Mnd Smart also included fast tracking . Turned the trial down.

    #2
    Understand where you're coming from Billy. Just one point.These presumably were repurposed existing drugs - I assumed if they proved effective for you, you might be able to return to doc, say that they proved effective for you, and ask he might prescribe to you on named PT basis (see admin-mnd post today). Perhaps I've misunderstood

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      #3
      Do we get paid?
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        I was turned done of participation in MND Smart by Salford specialist nurse after my tests (blood test, blood pressure test and an ECG). All of the tests were repeated and an echocardiogram was done by my GP’s referrals. My GP said that my ECG indicated that I’d had a mild heart attack at some point. I had the echocardiogram today, a 24 hour blood pressure monitor 2 weeks ago and been test about a month ago, Lynne
        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.

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          #5
          yes existing drugs , but for some reason they wont see daylight until the politics etc are done. oh and no payment .you get your own way to hospital and back.

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            #6
            Other drug trials pay mega money
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              Was the drug being tested commercially available?

              Aeterna Zentaris announces the start of preclinical development of Macimorelin at the University of Queensland as a potential new treatment Option for ALS. It's a growth hormone and it seems to be commercially available, but I'll not be buying any until they start testing it on people.

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                #8
                Originally posted by BobFOwen View Post
                Was the drug being tested commercially available?

                Aeterna Zentaris announces the start of preclinical development of Macimorelin at the University of Queensland as a potential new treatment Option for ALS. It's a growth hormone and it seems to be commercially available, but I'll not be buying any until they start testing it on people.
                Thanks Bob, found a link to some info on this:

                Aeterna Zentaris Announces the Start of Preclinical Development of Macimorelin at The ... (apnews.com)

                Very early stages but it goes on the ever growing list of potential treatments

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                  #9
                  Hi Bob - Thanks for that. I took a look . I couldn't find on Social Medwork - or from more few dubious-looking suppliers
                  Gordan1111
                  Forum Member
                  Last edited by Gordan1111; 25 May 2021, 15:54.

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