Viewing 6 reply threads
  • Author
    • #16573
      Isaac Feldman

      I seem to have had a change in my taste buds.  Some foods don’t taste good anymore such as meat or chicken soup while others taste ok ie sour fruit.  It’s destroying my love for food and causing weight loss.

      Wondering if anyone has this experience?  I was told by the clinic that it might be a lack of zinc so I am taking the supplement but it’s not helping.  It’s not covid either because I’ve been tested.


    • #17111
      Jens Buss

      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

    • #17116
      Marianne Opilla

      My taste buds are also changed.  I cannot eat many fruits or juices, and strangly, strong cheese like sharp cheddar.  It seems to be bitter and sour flavors.  The speech pathologist had not heard of this with ALS.  I think my tongue has gone thru so many changes that the taste buds have been negatively affected.

      I have always been a chardonnay drinker for years….no more.  Too sour!

    • #17122
      Marianne Opilla

      Something you could try are smoothies. Load them up with calories from milk, ice cream or yogurt, peanut butter, and add protein powder.  If you use a straw in the back of your mouth, it bypasses the messed up taste buds and may be better tolerated.  Many good recipes on the internet.

      • #17161
        Dagmar Munn

        This is a great suggestion Marianne 🙂

    • #17146
      Carl McAndrew

      My husband has been taking Riluzole  since his diagnosis on July 2019.  His appetite is still great, but after a few months he can’t taste anything and his sense of smell is gone.  So he backs off and takes one Riluzole a day, and in about two weeks the taste is totally back.  When ever there is an event or a holiday he makes sure he is only taking one pill for at least two weeks before.

    • #17157
      Scott Peirce

      yes, taste is way off and losing weight again.  7 lbs since August.  last mass weight lose was jan 2020.  10 lbs. then stable for 9 months.

      food taste bland except pasta sauce and a few others.

      my first symptoms was salt and chocolate tasted different to me 3 years ago, before any other real issues.


    • #17190
      Suzanne Akerman

      My taste buds are whacko too. I don’t like coffee after being a 6 cup a day person. Canned chicken soup is awful. Homemade soup is better. Told my husband how to make pea soup, and it was good I had it for breakfast.

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