Forum Replies Created

  • Jens Buss

    Member
    December 10, 2020 at 10:14 am in reply to: Taste buds are off…losing my appetite!

    hi Isaac

    if you dont use noninvasive ventilation yet, you should do.

    I had this experience 10 weeks ago.

    since I startet the niv ventilation, my appetite came back after 24 hours

  • Jens Buss

    Member
    December 9, 2020 at 9:12 am in reply to: What’s the latest news on AMX0035?

    Hello everybody

    amx 0035 is availabel allready … you just have to buy TUDCA and you need a doctor for presciption of

    Ammonaps which is the trading name for Natriumphenylbutyrate.

    I am doing exactly this medication since about 4 weeks now and I still feel good, no perceptible change in progress of the disease and no side effects.

  • Jens Buss

    Member
    January 2, 2020 at 10:36 am in reply to: Exercise and ALS (Continued)

    Hey all
    I have very good experience with my Berkel Bike.
    http://www.berkelbike.nl
    You can used in and outdoors which I like a lot during warmer seasons.
    So check out the link above.

    Jens

  • Jens Buss

    Member
    December 28, 2019 at 3:57 am in reply to: Ibudilast (Ketas)

    Hi to all of you
    I did the same, bought it from social medwork. But I take it for 10 days only, so no improvement yet. But starting from January I will combine it with TUDCA and Ammonaps. The idea is to copy AMX 0035. As you can see, I even try all what might be helpful. I’ll keep you updated if there is any improvement.
    By the way, my name is Jens from Germany. I have been diagnosed with ALS since 18 months. I still can walk a couple of meters with actually no bulbar symptoms.
    I am do my own trial, because my progress is too slow for being part of a official trial.

    Greetings Jens