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Thread: TUDCA-ALS Clinical Trial Is Recruiting

  1. #11
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Hi Lynne

    I can understand why they would want people to have a score of 4 for swallowing (because they obviously don't want a patient to choke on the tablets or have any discomfort while swallowing them) but perhaps check with your neurologistist whether you have been scored a 3 or 4 so far?

    I found an online version of the scale and it says a score of 3 is 'early eating problems - occasional choking' (I can't remember if this is the version currently used by the NHS though?):-

    http://https://www.neurotoolkit.com/alsfrs-r/

    I hope all goes well at your next hospital appointment.

    Love
    Kayleigh

  2. #12
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Thanks Kayleigh x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #13
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    do you know which tudca brand they are using at the trial ?

    is it a supplement or a drug ?

  4. #14
    Forum Member Kayleigh's Avatar
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    Hello Timm

    The EU Clinical Trials Register has got the Trade Name of the drug listed as 'Taurolite':-

    http://https://www.clinicaltrialsregister.eu/ctr-search/trial/2018-002722-22/GB

    The purpose of the trial is to find out if it can be used as an effective treatment in addition to Riluzole.

    Further information about the trial:-
    http://https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/tudca-clinical-trial/

    Best wishes
    Kayleigh

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