Recent content by KCAE

  1. K

    Mexiletine HCL for cramps

    this may have an added benefit: ALSA/NEALS Webinar: A Phase II Study in ALS of the Effects of Mexiletine on Hyperexcitability of Motor Neurons MGH recommended this off label vice Retigabine, something I am pursuing.
  2. K

    PALS roll call Wednesdays ( or whenever)

    still working and still fighting the good fight
  3. K

    PALS roll call Wednesdays ( or whenever)

    I rarely login but visit daily while at work
  4. K

    Retigabine

    the science behind this trial New hope for treating ALS | Harvard Gazette this has real promise, so donate your skin cells.... ALS Clinical Trials | ALS Clinical Research | The Northeast ALS Consortium (NEALS)
  5. K

    Lumbar puncture

    I have had 2 at Mass General, in May and July. Within 90 minutes I walked to the train, rode to the airport, and flew home. They are using a new needle that prevents the leakage of spinal fluid. I have had no issues with these spinal taps.
  6. K

    clinic day today

    My SVC is measured monthly in the trial I am in. In April it was 80% and declined to 72% in August, a 10% decline. So I have a little over two years remaining? Nope, in September it was 78 %. These breathing tests have lots of variability and can only read lower than actual . They cannot...
  7. K

    Spinal tap

    I have had 2 at Mass General, in May and July. Within 90 minutes I walked to the train, rode to the airport, and flew home. They are using a new needle that prevents the leakage of spinal fluid. I have had no issues with these spinal taps.
  8. K

    On The Beach

    That's the book Max Barbie is partially correct, an Australian may know, but don't give away the ending...........
  9. K

    On The Beach

    When I was being diagnosed, I pulled out my copy of "On The Beach" and watched it. I recently read the book. The characters, through no fault of their own, are going to die in the near future and nothing is available to help them. The actions and emotions they go through are the same that we...
  10. K

    Public versus private forum

    i meant to say keep it PUBLIC, dam disease
  11. K

    Public versus private forum

    keep it private, don't type anything you want to remain private, and assume everything will end up on the web
  12. K

    Newspaper article and video – living with ALS

    Couldn't agree more with you more on the ice bucket challenge, a colleague at work made his family learn about ALS before doing it, more should follow his lead. I miss Purcellville, the "Trails End" of my cycling days. Always enjoyed ice cream with my girls at the end of the W&OD trail Keep...
  13. K

    ALS remission with glucocorticoids

    The final report for the Stem Cell trial states "This phase 1 study was funded by Neuralstem; the phase 2 study is funded by the NIH National Institute of Neurological Disorders and Stroke", but I am certain some will think NIH is also corrupt. I have no more facts to present, and even though...
  14. K

    ALS remission with glucocorticoids

    This study, Immunosuppression in Amyotrophic Lateral Sclerosis (ALS) (NIPALS2013), uses existing drugs and is sponsored by Emory University and the ALS Association, neither are in it for the money. And 1% of 30,000 (the number of Americans with ALS) is 300. Developing drugs to treat such a...
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