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Thread: BrainStorm to start adult stem cell trial for ALS

  1. #51
    Forum Member roy's Avatar
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    Agreed Graham, is it cost,legal claims,lack of belief in the technology,I have to say the cost of keeping us veggies alive
    Must be huge so why not use us as volunteers to as you say give us a spark of hope.Maybe it would be better not to
    report any developments as the only one in recent years was 17 years ago to give an extra 3 months still that's better
    than nothing thanks very much Bofins.
    Good as it gets :-)

  2. #52
    Forum Member Robert's Avatar
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    Hi Roy,yer i'm still ere,another 3 months of purgatory,as I've said before why? if it can stop it for 3 months,why not forever, they are on the right track so why have they not improved it,you know as well as I do, it ain't no good,
    We are the Champions my friends,we'll go on fighting till the end.

  3. #53
    Forum Member Rory's Avatar
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    Where is Riluole Extra, or Riluxzole 2 ,or Riluole Plus, or Riluzole Super, or Riluzole Super Plus Extra 2 ?!!

    If we can improve toothpaste, washing powder and floor cleaners every few months what are we doing about Riluzole - or do I mean Riluzole Original !

    It does what it says on the can - Nothing !

    Rory
    New Year's resolution -not to get MND again !

  4. #54
    Forum Member roy's Avatar
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    Well here is a thought,I was told my rilulzole costs 400 quid a month, not sure if that's factual.but if it is assuming 3000 are taking
    It over a 1 year period I wonder if it would generate enough money to send at least one of us to Isreal or Scotland for real
    treatment rather than fill the pockets of some fat cats pocket for a Mickey Mouse drug.I had to fight tooth and nail to get
    The wonder drug,should have listened to the neuro, he was certainly not positive about the benefits.
    Good as it gets :-)

  5. #55
    Forum Member roy's Avatar
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    The other interesting fact,Mattj started this encouraging post 2 years ago I'd put a wager it might be still going in another 10
    I wonder if I will?
    Good as it gets :-)

  6. #56
    Forum Member Laila's Avatar
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    On Riluzole, I hear on other forums that it has gone generic in the USA and is costing a lot less there now, about 12 dollars a month, don't know if its the same here.. I made the decision not to take it. Laila.
    Last edited by Laila; 1st July 2013 at 08:27.

  7. #57
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    hi All,

    My last prescription was generic Riluzole
    Die? That will be the last thing I do

  8. #58
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    My last one was generic too. Change in licensing maybe?

  9. #59
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    Likewise, my last two prescriptions have been for generic riluzole, both of them turned out to be by a different manufacturer, (the last lot tastes like dettol) - our pharmacist who is also a friend told me the rilutek cost 340 a pack, the generic about a third of that. We're getting cheaper guys... Does anyone know why the 'taking' directions in America for rilutek are on an empty stomache and ours isn't?

  10. #60
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    Hi John(Wensleydale),

    If possible, could you paste here the posts off alstdi, in which the (brainstorm) clinic in Switzerland was offering stem cell therapy. I cannot access alstdi now.

    Take care mate.

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