Patient Comments: ALS - Experience

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

Comment from: Teri, 65-74 Male (Caregiver) Published: April 21

My father had ALS (amyotrophic lateral sclerosis) for 3 years before he passed. His first symptoms were weakness in his hands and losing his balance which led to stumbling and falling. He never lost the ability to swallow or breathe. His one hand, then his legs, were affected first; then his arms. He passed peacefully without struggling for his breath, thank goodness!

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

ALS - Early Symptoms Question: What ALS symptoms did you notice early in the course of the disease?
ALS - Treatment Question: Have you or someone you know tried riluzole? Please discuss your experience.
ALS - Research Question: Have you, a friend, or relative participated in a research study for ALS? Please share your story.

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors