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    Ampyra and walking farther?

    Does Ampyra help you walk farther or just let you get a small distance faster?

    When I went to get a wheelchair from the VA the nurse suggested I go visit the MS center for excellence in Dallas.

    I saw a nurse practitioner who got me started on Ampyra. She told me they could only give me a 2 week supply and then I would have to schedule another 25ft walk test to see if I am improving before giving me more. She told me I could schedule it with Temple Neurology but they have no idea what that test is.

    Dallas is two hours away from me and I would have to get someone to drive me because I can't make it from the parking lot to the clinic so I am trying to figure out if it is worth the hassell?

    I don't care about getting 25ft 2 seconds faster but I would like to go 400ft.
    May 2003-Avonex started
    July 2007-Rebif
    Laugh than Pray!

    #2
    Dear stacey,
    I took Ampyra for a few years, and it did improve my walking - speed, coordination, and distance. Now I take a compounded version of the active ingredient, 4-ampyradine. It doesn't work quite so well, but my MS has advanced also. I got patient assistance from Acorda, the maker of Ampyra, but it has been discontinued. My medicare Plan D has a very high copay even for the new generic versions. That is why I resorted to a compounded medicine.

    The 25-foot walk test is something my neuro does every visit. The speed is recorded. But I don't think that means that my treatments are solely limited to things that might improve such a short distance walk. The 25-foot test is a requirement for Ampyra, I understand, because that medicine doesn't work for everyone and even a little walk can reveal whether walking in general is getting any better. One third of MS patients get no result, one third get some benefit, and one third have a great improvement. I think I am in the top of the middle.

    My walking is more fluid, and all my movements are easier and faster with the medicine. Falls are rare. Nevertheless, without taking frequent rests, I can only walk (with my walker) a block or two on a "good" day. I use my cane in interiors (church, restaurants, social gatherings). At home, I can coast along without any aide. If I forget to take the medicine, however, I notice all of my movements are much much worse. So I feel that it is useful.

    I hope you get enough information from a neurologist about your particular MS to assess the benefit to you. Good luck in your efforts.

    Stay lifted,
    Mermaid Susan
    "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
-Henri Amiel

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      #3
      Originally posted by stacey View Post

      Dallas is two hours away from me and I would have to get someone to drive me because I can't make it from the parking lot to the clinic so I am trying to figure out if it is worth the hassell?
      Call and speak with the Dallas SPI/D social worker. They will send a van to pick you up at your house and return you home after your appointment. The last time I was there the social worker was Jennifer Helm.

      I wish you well...

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        #4
        Thank you Mermaid Susan and Marco for the input.

        I noticed an improvement today so it might be worth the effort.
        May 2003-Avonex started
        July 2007-Rebif
        Laugh than Pray!

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