rilutek

  1. J

    Fasciculations driving me crazy!

    I walked on the treadmill as I was told, 5 minutes on, 5 off for 30 minutes total walking, my legs have not stopped since, maybe I over did it, my body is still getting used to rilutek and the many vitamins that I started 2 weeks ago, just venting.
  2. M

    6 months ago today I received my diagnosis...

    I guess all things being considered I am doing pretty well... Entered and completed Tirasemtiv drug trial Physically still in relatively good shape (right arm/shoulder continues to deteriorate), but no other noticeable decline in other body parts since Jan Setup vacations with family (Alaska...
  3. J

    NEWLY DIAGNOSED with Bulbar Palsey

    Hello, I am Janie and just got the diagnosis this week, I was told that if I do everything that the doctors say that I could have 10-20 years. Prescribed Rilutek (Very expensive) starting to work on the twitches already, I hear that a generic may be available soon, any one know about this?
    • Janie H
    • Thread
    • bulbar diagnosed diagnosis newly diagnosed rilutek twitches work
    • Replies: 29
    • Forum: Newly diagnosed
  4. NotALS!

    Diagnosis changed from ALS to MG

    Three years ago, I was diagnosed with ALS, early onset, at Yale New Haven Hospital. I was 49. The neurologist immediately said "don't try antibiotics, they don't work and they just make you sick". He gave me a prescription for Rilutek and sent me home to die. My husband and I immediately began...
    • NotALS!
    • Thread
    • ability als atrophy autoimmune back breathing ceftriaxone cold decline diagnosed diagnosis early emg genetic health hope information insurance ivig muscle neurologist onset oxygen progression research rilutek slurred speech speech swallowing switch symptoms tests work
    • Replies: 4
    • Forum: Stories of hope
  5. Q

    Rilutek cost

    Just got back from picking up my Rilutek and the cost has gone up again. Now $2,035 for one month supply of 60 tablets. So in the medicare gap my share of the price is $1,008. Is anyone incredulous about this increase. Last year it also increased from about $900 to $1,129 if I remember...
  6. jellis86

    First ALS clinic appointment at VA Hospital

    Hello All, I went to my first ALS clinic appointment at the VA Hospital in Minneapolis, MN. 1st off let me state that the level of care I received there, for the most part, was as good as or better than the ALS clinic at the Mayo Clinic. They both have their good and bad points, but I was...
    • jellis86
    • Thread
    • ability als als clinic back breathing bulbar bulbar als bulbar onset clinic communication early eye eye gaze fvc improvement meds onset pulmonary function test rilutek speech test tests
    • Replies: 9
    • Forum: People with ALS (PALS)
  7. G

    Free at last

    My life partner of over 13 years, Michel, passed away on Friday, April 5, 2013. His first symptoms showed two years ago. His case was one of the most aggressive his neurologist had seen. But through it all, he was brave and strong and proud. We spent the last 6 months enjoying life, the summer...
    • grahamalex61
    • Thread
    • back cals cry early free grief holiday ideas life lift love mnd my hero! neurologist pneumonia positioning reading rilutek running saliva secure support symptoms wanted wheelchair
    • Replies: 13
    • Forum: In memory of
  8. J

    First ALS clinic visit tomorrow

    I've been hanging back, but reading quite a bit. I feel like I tell y'all my mom isn't "that bad," and then I go visit them and I find myself consciously forcing myself from visibly showing my reaction... my reaction to how thin she is... how slowly she moves... how slurred her speech is...
    • JamieL
    • Thread
    • age als als clinic anxiety back clinic confusing cure dad kids meds night questions reading rilutek sleep speech test vent voice work
    • Replies: 8
    • Forum: Current caregivers
  9. L

    Nutrition, vitamins and herbs

    I have been diagnosed with ALS this month (March, 2013) by 3 different neurologist. It started out about 7 months ago with a weakness in my right hand. I am trying to stay positive, because I believe that's the most important thing. Without going through my life story, I simply want to know from...
  10. B

    diagnosed on March 1

    The earliest symptom I detected, was early last summer with my right leg unable to be lifted as high as my left. In approximatly January of this year, I experienced foot drop again on the right. After X-rays and MRI of lower back, I was sent for EMG on Feb 26. With a follow-up with a...
    • brienw
    • Thread
    • als back diagnosed early emg foot foot drop hope manual mri progression rilutek supplements symptom twitching work
    • Replies: 4
    • Forum: Newly diagnosed
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