starente15
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Anyone experience loss of taste while on riluzole or know if it can come from ALS in general?
Riluzole loss of taste?
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ECpara
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Starente15, I do remember when my husband was still eating that he complained of having no appetite and he couldn't taste as well. He ate wings with hot buffalo sauce for taste! He's been on riluzole since diagnosis.
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I know that Chris had many mouth changes. Beside the bulbar stuff we all know about.
He lost his ability to distinguish sweet and sour so well.
He also lost his tolerance to hot food (as in temperature).
He was previously a cafe owner who cooked all day long. He had very sensitive taste always judging did it need more this or that and could eat something made by another and know what was used to make it taste that way.
He also had what we called a 'cast iron' mouth - he could taste and eat things bubbling hot out of a pan. He always served up very hot food and I always had to be careful to cool mine well, but he would just eat on straight up. He lost that and things that were barely hot to me would nearly burn his mouth.
He lost his ability to distinguish sweet and sour so well.
He also lost his tolerance to hot food (as in temperature).
He was previously a cafe owner who cooked all day long. He had very sensitive taste always judging did it need more this or that and could eat something made by another and know what was used to make it taste that way.
He also had what we called a 'cast iron' mouth - he could taste and eat things bubbling hot out of a pan. He always served up very hot food and I always had to be careful to cool mine well, but he would just eat on straight up. He lost that and things that were barely hot to me would nearly burn his mouth.
SMP51
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lost of taste was the reason my Steve decided not to go on it. with his symptoms starting at the feet and progressing up he decided that an additional bit of time tacked on to the end of this journey was not worth the risk of loosing the only enjoyment he might have left.
now if his ALS had started with bulbar the choice may have been different...... many thing to consider with many aspects of this disease
now if his ALS had started with bulbar the choice may have been different...... many thing to consider with many aspects of this disease
MaxEidswick
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>If you let it stay in your mouth even a second it will numb it for sure
Ditto that!
Ditto that!
blainefa
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I lost most of my sense of taste at least 18 months before I was diagnosed with ALS. When I tried riluzole I lost what taste I had left. After quitting riluzole I once again can taste bananas and chocolate.
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