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Thread: My experience with Ampyra

  1. #11
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    Keeping on - thank you for the positive info. I only wished it would work for everyone. I pray stem cell therapy is our next answer.

  2. #12
    MSWIFE1, I tried to enter a friend. Let me know if it worked. There is so much news on ms, and spinal cord injuries, and satem cell therapy. It looks good for advanced treatments; don't know when and how. News like the effects of Ampyra is tantalizing in that these are new advancements. I can't help but think that reconnecting nerves is a matter of time. I can't help but think that the News in the not so distant future will show people with some advancement in walking and standing. I am an incomplete and had a devastating auto immune attack on my cord. I hope that one day I will be on the news showing off the ability to walk again.

  3. #13
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    I can't agree more, I only hope the funding is there to continue on with the progress. I will check my friend list shortly. I am trying to get David to sci-step in hopes that will help with his muscle rebuilding. I am so glad to have someone else to talk with about this and that is as excited about it as me. I can hear it in your tone, I hope and pray everyday that today is going to be the day.

  4. #14
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    How is it going Goat???

  5. #15
    Senior Member goat's Avatar
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    Quote Originally Posted by MSWIFE1 View Post
    How is it going Goat???
    Thanks so much for asking! In short: SSDD
    I have no Rx coverage, so the IRA was raided to fund 2months of Ampyra. I was sooooo excited to begin! Finished the first bottle; I don't want to accept that it won't help - so I got a refill. Almost 1/2 finished with it... have noticed nothing - which SUCKS.
    "Let your food be your medicine" - Hippocrates

  6. #16
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    I am so sorry. I was hoping for good news as I am sure you were too. I don't understand why it helps some and not others. Another medical mystery I guess.

  7. #17
    I don't know if this is typical or not - I have a 15 year old T-6 incomplete SCI.
    I've been on Ampyra for nearly 3 months. After reading some posts I expected some sort of miracle in the first 24 hours - didn't happen for me. But I have had a lot of nerve pain on Ampyra (never had that before) that seems to foreshadow some kind of return of function. For the first time I can "suck in" (for lack of a better term) my lower abs and I've recently been getting a lot of pain and spasticity on my right (weaker) side so I'm hoping that means I'll start getting some return there, too!
    I would encourage anyone to try this!

  8. #18
    Thanks for the postings, I am hoping to start the compounded version soon. My Dr wants new MRI's 1st. Goat re: no rx coverage I think I seen posted the drug company may be offering assistance or compounding may be an option for you too, Skip's is supposed to be around 120-140 for 3 months.

    I know I am excited to try this med, I hope you can continue! Great to hear all the postings encouraging to try the med, very positive.
    Best Regards,
    Minnie

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