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  • Users: Manda
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  1. M

    Orphan drug, thoughts?

    Thoughts? Sorry if this is not knew information or has already been addressed. Just wanted to see if maybe someone knew more about this. https://alsnewstoday.com/2016/11/15/ema-panel-recommends-orphan-drug-status-als-therapy-ibudilast Thanks :)
  2. M

    I'm a lab rat, wish me luck

    Good luck! Look forward to reading about your updates and any results!
  3. M

    Stem cell America once again

    Hello, sorry if this topic has already been brought up far too many times. But I just thought I would share my fathers experience with stem cell America from a a couple months ago. I wanted to wait a little while before sharing just in case there were any changes in the results. So I believe...
  4. M

    Need suggestions...

    My father has ALS and is unable to use his hands and walk on his own. He can walk a little little with assistance. Anyways, I was wondering if anyone had any suggestions for activities that my family can do together with my dad? All we do is sit and watch tv and I always feel so sad because I...
  5. M

    Waking up in the night

    My father also wakes up 2-4 times a night, depending on which meds he takes. I think it must be a combination of discomfort, racing thoughts, breathing issues, and dependance on sleeping pills/pain pills. My dad also had an issue with always having to use the bathroom around 3-4 times through...
  6. M

    What ever happened with...

    What ever happened with that GM604 drug? I remember following the excitement over this drug but never found out what the end results were.
  7. M

    Hi, I just wanted to thank you for all of your responses on everyone's posts. You are always...

    Hi, I just wanted to thank you for all of your responses on everyone's posts. You are always such a helpful member to everyone and it's really appreciated. Thank you!
  8. M

    FDA Accepts Filing of ALS Drug EdaravonE

    So in reality, when do you think this drug is REALLY going to be avaliable for patients to try? Don't worry my hopes are never high.
  9. M

    Believing in false hope

    My father has ALS. I am his 20 year old daughter who is very close to him. I still don't think I have accepted that he has ALS, even a year after his diagnosis. I think, with all the articles I read about different "breakthroughs" and "promising results", that I have tricked myself into...
  10. M

    Please help, please please

    It makes me feel a little better that we are not the only ones. I just don't know why he can't sleep and if that's even the true reason he gets up every 2 hours a night to get another ambien. But I will defiantly suggest the extended release and insist he talk to his doctor, it's just hard when...
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