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Thread: Live from Working 2 Walk 2010!

  1. #121
    Senior Member kate's Avatar
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    Just made the year-end donation to u2fp

    If anybody's feeling generous and able, they could use the support. It's tax deductible!

    www.u2fp.org

  2. #122

    Done.

    Thanks to all @ u2fp for all your hard work.

  3. #123
    Senior Member
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    Quote Originally Posted by litespeed4 View Post
    Thanks to all @ u2fp for all your hard work.
    X2 - and a Happy New Year to all!

  4. #124
    anthony 2 months ago you mentioned ampyra on this form 11/11/2010 and that you could not talk about it as it applies to sci paitents. I am an incomplete sci paitent who has just received a 1 month supply of ampyra and as the price is beyond expensive it would sure help to have you or anyone help me by telling me if it effective?? how long before you see some results?? am i waisting my time and money?? have i reached out to far with ampyra and thus established a FALSE HOPE?? please respond ANYONE who might have info on amprya thanks poobear if you wish to stay below the radar e-mail me at poobear7788@comcast.net

  5. #125
    poobear, I can talk about my use with ampyra; I've noted several times on this forum ,my experience with it. I've had no positve effect with the medication. Wise had said there might be some benefit. I've talked to 2 patients who have ms and have benifiited fro the use of Ampyra. A lady I met at tnbe wheelchair fitting place here in Pittasburgh was using it and she could lift her leg and knee up from the wheelchair. I saw this firsthand. She indicated she could stnd for a miute or so unattended. She also was able to lift her legs into the car when gettin ginto the car fron the wheelchair. The other patient has a wife who is on the forum. she indicated that shrotly after starting the medication, her husband was able to stand for a short period and some other benefits. I've seen none of these and was told from the company that benifts could occurr up to 6 months of taking the medication. Hey, it was a try and I'm glad I tried but no effect on me. I will go to the next legitimate therapy when it becomes available. I am happy that it does work on some patients.

    keeping on

  6. #126
    thanks keeping on for your swift reply. am sorry that it did not help you and agree with you that everything that comes along is worth a try [provided it is thoroughly checked out.] how long did you take the amprya? as i stated i have 1 month's supply and dont know if i should go further.[verry expensive] $1,400.00+ plus per month. by the way in passing i tried stem cell treatment in sept. 2010 and to date no positive results with that. thanks again poobear

  7. #127
    poobear; 2 months and noevidence of improvement. Very expensive but worh a try .Hopefully there will be more and more things to try in 2011.

    keeping on

  8. #128
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    Quote Originally Posted by poobear View Post
    thanks keeping on for your swift reply. am sorry that it did not help you and agree with you that everything that comes along is worth a try [provided it is thoroughly checked out.] how long did you take the amprya? as i stated i have 1 month's supply and dont know if i should go further.[verry expensive] $1,400.00+ plus per month. by the way in passing i tried stem cell treatment in sept. 2010 and to date no positive results with that. thanks again poobear
    I know I'm being naive, but how is this so expensive? Sure, r&d costs are often high, and getting the necessary go ahead from regulatory bodies is always expensive, but after some time in production the costs should decrease... or maybe they have and were even higher originally.

    As to efficacy, is this connected entirely to the cause of paralysis, or due to variations in the variable biochemistry of individuals?
    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  9. #129
    they accepted me to take Ampyra because my affliction somewhat reflects ms but not totally. I got no response from the drug. O have mentioned that I saw first hacd of th esuccess as a lady with ms was able to lift her legs , get in a car, and stand for a period of time. this nest step for Acorda is to get the chondra product into testin g with Dr Silver of Case Western. It looks goo das per Silver's enthusiasm an dtesting on animals. We as a group have to be viglient and pester Acorda to fast track this for all. Remember Silver has said he feels STRONGLY that those of us on vents have a real chance of getting off them with this therapy. He has gone to say that many other improvements will be accrued. We have a job to do.

    anthony

  10. #130
    I "unstuck" this thread because it has not had any posts for nearly a year. Wise.

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