Information or results on RILUZOLE
Has anyone been using the drug RILUZOLE. My neurologist has suggested that I begin using this drug and from my research I am skeptical. I read about the side effects and the purpose of the drug which is that Riluzole works by decreasing your body’s levels of glutamate, an amino acid that affects nerves that send messages from your brain to your muscles. People with amyotrophic lateral sclerosis may have very high levels of glutamate, which can damage these nerve cells. So my concern is that I don’t recall any blood work that suggests that my glutamate level is high.
The side effects shown here seem typical of just about everything else you see on TV
Dizziness, lightheadedness, drowsiness, tiredness, nausea, vomiting, diarrhea, loss of appetite, stomach pain, or numbness/tingling around the mouth may occur.
I am still able to get around which includes driving but I have noticed a significant decline in just the last 6-7 months of upper body and strength in arms. Currently I can use arms but basically no strength in lifting items over 10-15lbs to waist height or almost any item above chest height. I was officially diagnosed 1 year ago , 2019, with ALS but I have had the symptoms worsening since mid 2017 and obviously didn’t realize why my strength was diminishing rapidly until I finally began going to physicians for testing.
Thanks in advance for any feedback
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