Patient Comments: ALS - Experience

Have you or someone you know been diagnosed with ALS? Please share your experience.

Comment from: CATMC, 65-74 Female (Caregiver) Published: May 13

My mom was given the news that she has ALS, by the doctor that performed the nerve testing a week ago. He wasn"t very good at it so I don"t think he usually does it. He asked her to return to her primary neurologist without giving us any more information. I have been doing a lot of reading without really knowing what I was looking at. I believe it to be the bulbar palsy with some weakness in limbs, but we go back next week to find out for sure. If I read it correctly, having significant limb involvement with this type is very rare. Hoping he will send us to a clinic.

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Comment from: Cheryl W, 55-64 Female (Caregiver) Published: October 15

My friend was diagnosed with bulbar ALS in the summer of 2012; she passed away in September 2013. Her initial symptoms were quite noticeable. She first experienced weakness in her right arm and her speech and swallowing abilities were profoundly affected. She did little to seek help for this disease, as she had been her brother's caregiver a few years earlier for the same disease.

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