I too am curious what other ALS patients have experienced with this. My ALS doctor just prescribed Gabapentin (100 mg at night) to help with possible sciatica (low back) pain & leg pain & swelling. I’m also taking Baclofen for muscle cramping.

I too am an ALS patient 56 years old.  Too young for Medicare and don’t qualify for Disability (due to being a stay at home Mom for the last 17 years).  I’ve been in contact with Social Workers, Disability itself, and they all checked into it for me.  They too even agreed our system is flawed, and I’m one who falls through the cracks.  It’s… Read more

I too like so many of you experience the extreme fatigue.  This continued even well after stopping the Riluzole.  I am low on B-12 & continue taking the b-12 supplement.  For me, I think it’s just a matter of the Beast/ALS Progression.

Before my official diagnosis I tried acupuncture once a week for several months as I was advised that it might help with the nerve damage issue (they didn’t know I had ALS yet).  Although I liked it and found it very relaxing it did not help with any of my symptoms.  After my diagnosis and going to my local ALS Clinic, they signed me up for a… Read more

I was diagnosed with ALS in September 2019.  Started taking Riluzole end of October.  Neurologist had me start out with just one a day for 2 weeks and then increase to the twice a day.  I too had dizziness/light headedness but continued taking it.  In January 2020, the Dr. did bloodwork and said the liver levels were slightly elevated (after… Read more