Forum Replies Created

  • susanarchitect

    Member
    November 24, 2020 at 3:58 pm in reply to: Genetic Mutations and Muscle cramps?

    yes C9 gene and muscle cramps..first in calves then hands

    My late dad also C9 had bad leg cramps

  • susanarchitect

    Member
    October 15, 2020 at 2:38 pm in reply to: Home renovations and ALS

    We are adding an elevator and making bathroom and kitchen more accessible. no step shower.

    a nice front porch with ramp and deck too.

     

  • susanarchitect

    Member
    August 13, 2020 at 2:48 pm in reply to: Have you traveled soon after your diagnosis?

    Yes traveled with cane and scooter but since March 2020 home bound.

  • susanarchitect

    Member
    July 30, 2020 at 3:11 pm in reply to: Rilozole experience?

    I took it for 6 weeks then bad side effects, light headed, distressed stomach, and weakness and more..Doctor said to stop  so I did.

  • susanarchitect

    Member
    June 30, 2020 at 4:27 pm in reply to: Information or results on RILUZOLE

    I took RILUZOLE for 6 weeks and the side effects were awful. so my neurologist told me to stop and I felt much better.

    Susan

     

  • susanarchitect

    Member
    June 16, 2020 at 2:36 pm in reply to: Do you experience muscle twitching?

    I did have some but then I stopped caffeine and ate well and gluten free too.  So my body is calm now

    also B12 and D3 and other vitamins and zinc.

  • susanarchitect

    Member
    June 16, 2020 at 2:32 pm in reply to: Do you experience muscle twitching?

    I did have some but then I stopped caffeine and ate well and gluten free too.  So my body is calm now

  • susanarchitect

    Member
    June 11, 2020 at 4:33 pm in reply to: Does ALS slow you down?

    oh yes, I was diagnosed 11/19 and in my legs and some weakness in arms but still functioning…Getting dress takes 10 x’s as long but I’m very careful too. Making Lunch takes awhile but I’m OK with ALS time so far.

     

  • susanarchitect

    Member
    May 26, 2020 at 2:21 pm in reply to: ALS Awareness Month Spotlight: Susan Gray

    Hi Susan,

    I noticed my left foot slapping in October/November of 2017. I was misdiagnosed with Lyme, the test and Positive for ALS. I was with a cane for a good year, then a walker and wheelchair. As a hiker, I purchase a Grit Freedom Chair, that is good on hills and dirt paths. Keep moving as long as you can!

    I’m a Susan too.