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Another update 😊

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    Another update 😊

    Hi Guys

    been offline for a while as I spent October in the Philippines. But I had to return early because I was accepted to participate in the wave study WVE-004-001 and I had my day one yesterday. Throughout the day my vitals have been measured and all the rest. In the afternoon I had my lumbar puncture with injection of med/placebo. So far so good. But one thing that now bothers me big time are the blood samples. In the past I never minded them but since yesterday they have become a kind of a nightmare for me. I had blood taken every hour.I just can’t see these needles anymore.πŸ™ But I need to pull myself together somehow.

    anyone here made a similar experience ?

    best wishes

    Sorry your holiday was cut short but yabba dabba doo it was to haul your donkey back to London and start on that trial!!

    Originally posted by Marc from London View Post
    I had blood taken every hour.I just can’t see these needles anymore.
    What... no cannula, a needle every hour?? xx

    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


      Ellie yeah I had booked a flex ticket. In case i wasn’t accepted but but ole here I am. lol

      yes there were cannulas but they clogged up all the time.

      oh well have learned today I have 6 lumbar punctures. At 2 of these I get the med/placebo. 10mg. I will now monitor if I have any particular physical decline in the next couple of weeks. As this would mean I only received a placebo or 10mg is not sufficient or worse the drug doesn’t work.

      Best wishes


        Positive - being able to take flights.
        Positive - being able to travel
        Positive - having a month in the Philippines

        I would just ask for a cake each time they take a sample.


          Marc from London very brave, 🀞 it helps x
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!


            Were the regular blood tests by individual drawn sample, or a fitted cannula?

            (I've had SYNACTHEN tests for Addison's Disease a couple of times, but the regular timed blood samples were from a cannula, not individually drawn by needle).
            2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
            Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...