Nancy
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Instructions with my riluzole indicated taking it 2 hours after eating and/or 1 hour before. Does anyone have insight on if those time frames are necessary?
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Regarding taking Riluzole or not: each of us will really never know if it is helping, if you start taking it and the presumed side effects are too difficult to deal with, you can stop taking it. My neurologist felt that not that many people experience the side effects. I am taking it and I feel more tired, but as Dagmar indicated this may be the effect of ALS, not the Riluzole.
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My appointment was scheduled for March 18th. The Friday before that I received a reminder and I confirmed the appointment. 36 hours before the appointment I was told not to come. Luckily that occurred before we started the 10 hour drive. So far, no news on when it might be rescheduled. As it turned out, Salt Lake City had a major earthquake the morning of my scheduled appointment, so even if it had not been cancelled due to COVID-19 it might not have occurred anyway and we would have driven there and back for nothing.
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Having been diagnosed with ALS less than a year ago, I had no idea the forum is only a year old! You are doing a great job keeping the members informed with pertinent information. I am sure I have learned much more about ALS over the past seven months than I would have without accessing this valuable site. Thank you!
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I did not play contact sports, but starting in my 30s I did considerable running and racing in track and road races including training for and running several marathons. I think oxidative stress may play a role in why I now have ALS.