[Kim]

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.

[Kim]

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 the lack of work credits in the last 10 years since the disability diagnosis (1 year ago) as the reason I don’t qualify for Disability.  Age as the reason I don’t qualify for Medicare (until 65).  Husbands income as reason we don’t qualify for Medicaid.  We do have Medical insurance through my husbands employer.  Our insurance doesn’t cover “durable medical equipment”, but our local/regional ALS Clinic has been a blessing.  They have lent us equipment from their loan closet.  Our local Town Hall also has a loaning closet that was helpful (shower chairs, walkers, rotators, etc).

[Kim]

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.

[Kim]

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 Massage Grant (6 in home massages).  I was able to receive 3 of the massages just before COVID hit, then the massage therapist was no longer able to come in to the clients homes.  The massages were the Best!! They helped so much with the muscle cramping and joint stiffness.  Wish I could of continued them.  I too would not be able to climb up onto a massage table if I had to go to a massage place.  This therapist came to my home and was able to do them either from my couch/bed or even just doing a neck one while I was sitting in my wheelchair.  I wish our insurance company covered them.  I know some insurance companies do cover them but unfortunately ours does not.

[Kim]

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 only taking it for 3 months) and with the dizziness they didn’t feel it was worth it and had me stop taking it.  The only medication I’m on is Baclofen for the muscle cramping, Vitamin B-12 prescription supplement due to blood levels showing low on that, and over the counter vitamin c and Vitamin D for immune support.  The ALS does seem to be progressing much faster than I’d  like.  I have limb onset and use wheelchair now.