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Showing Visitor Messages 1 to 6 of 6
  1. Bestfriendstilltheend
    06-28-2018 07:48 AM - permalink
    Bestfriendstilltheend
    HI Cherise,

    Right now we are away and will not be back until this Sunday. Because you do not have enough postings to send PMs, I will give Fiona my contact deatils to pass on to you so we can take by phone. There is a lot to explain about our journey with Edaravone so its best voice to voice. A quik recap is that my husband has been on it for 9 months, started the meds in Japan and we get it shipped directly from Japan. The Edaravone was he best decision we ever made and has slowed my husband's already slow progression even more.
  2. Cherise77
    06-27-2018 09:56 PM - permalink
    Cherise77
    Thank you! I have been looking into Edaravone. Good to know your Husband has had such great success on it.
    It looks like you live in Canada too. Does your doctor help you getting the Edaravone from Japan?
    Wish it was approved in Canada. Looks like it may be soon ����
    We’re exploring the NurOwn stem cell trial in California too. Problem is you can’t be on Edaravone while you’re in the 11 month trial. How long after symptoms began did your Husband start the Edaravone?
    I’ve read the earlier the better.
    Thanks for your advice ��
  3. Cherise77
    06-26-2018 06:18 PM - permalink
    Cherise77
    Thanks for the information. Definielty good to know. I think we’ll look in another direction as i’ve Read quite a few troubling results with Pimozide.
  4. Cherise77
    06-21-2018 03:07 PM - permalink
    Cherise77
    Hi I was just reading your posts regarding your Husbands experience with the Pimozide trial. I was just curious if he did continue on it with a lower does or decided to end? My Dad just got diagnosed and we’re looking into that trial as well as the NurOwn. Any input would help and be greatly appreciated. Thank you!
  5. mrscott
    02-11-2018 08:58 PM - permalink
    mrscott
    contact info passed on directly- removed by mod
  6. Brook
    09-29-2017 08:30 PM - permalink
    Brook
    My EMG appointment is next week. Have a nice day. :-)

About Me

  • About Bestfriendstilltheend
    What's your relationship with ALS/MND?
    I am a caregiver for someone with ALS/MND.
    If diagnosed, when was the diagnosis?
    05/2017
    City
    Calgary
    State or Province
    Alberta (AB)
    Country
    CA

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  • Last Activity: Today 03:33 PM
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