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Judy Silman-Greenspan

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    Judy Silman-Greenspan replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 8 months ago

    Yes, riluzole makes people tired = asthenia. it’s the greatest sleeping pill around combined with melatonin 5mg. It knocks me right out. For the daytime dose I make sure I am engaged in an active activity so I don’t feel it so much. I also take it with some food so it doesn’t give me heartburn. Fatty food really decreases riluzole absorption. You…[Read more]

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    Judy Silman-Greenspan replied to the topic Clenbuterol – trial NCT04245709 by Dr Bedlack in the forum Research Topics 1 year, 2 months ago

    Where were you able to get it? It’s not available in the USA. I tried getting my kids in Australia to bring it. They never heard of it there.

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    Judy Silman-Greenspan posted a new activity comment 1 year, 3 months ago

    Thank you for your perspective. I am a c9orf72 mutant for ALS. I also take riluzole. Would it have been better to put the entry in the first person? It really did happen to me.

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    Judy Silman-Greenspan replied to the topic Riluzole side effect in the forum Living With ALS 1 year, 3 months ago

    Try taking it with a low fat snack. Food, in general, decreases riluzole absorption. Fatty food really decreases riluzole absorption. It comes in handy as a sleeping pill 1 hour before sleeping.

    Best of luck.

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    Judy Silman-Greenspan became a registered member 1 year, 3 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 3 months ago

      Hello Judy,

      Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]

      • Profile picture of Judy Silman-Greenspan
        Judy Silman-Greenspan replied 1 year, 3 months ago

        Thank you for your perspective. I am a c9orf72 mutant for ALS. I also take riluzole. Would it have been better to put the entry in the first person? It really did happen to me.

    • Profile picture of Amanda
      Amanda replied 1 year, 3 months ago

      Hello Judy,

      I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with A…[Read more]

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