October 16, 2020 at 11:21 am #16573Isaac FeldmanParticipant
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.
December 10, 2020 at 10:14 am #17111Jens BussParticipant
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
December 10, 2020 at 3:31 pm #17116Marianne OpillaParticipant
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!
December 10, 2020 at 5:30 pm #17122Marianne OpillaParticipant
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.
December 11, 2020 at 2:24 pm #17146Carl McAndrewParticipant
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.
December 12, 2020 at 1:20 pm #17157Scott PeirceParticipant
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.
December 15, 2020 at 5:07 pm #17190Suzanne AkermanParticipant
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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