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    Ampyra?

    My neurologist suggested I start Ampyra. I struggle so much to make my legs go faster and qualified with the 25' walk with flying colors.

    I told him I would like to try it. But I wonder what others have experienced with it. I have bad insomnia and couldn't bear to have that get worse. I guess only 30% of patients benefit from it.

    I'm crossing my fingers, what was your experience?

    #2
    Moderate results here, no notable side effects. gl to you if you try it.

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      #3
      Hi Palmtree.

      I tried ampyra quite a few years ago. I didn't note any improvement in my walking. My walking speed didn't improve.

      I don't remember it affecting my sleep but it did make me feel a little wired like I was on speed. Made me me more talkative and out going. Which I didn't really mind.

      That being said I think it's worth a try. I think it might have helped more if I had tried it sooner before my walking got so bad.

      Good luck! Eileen

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        #4
        Not so good on Ampyra

        I tried Ampyra this past winter. It made my leg feel more relaxed and easier to move, but not stronger or necessarily faster. I also noticed a marked decrease in my core strength, to the point where it felt like an effort to straighten all the way up.

        I went off in April and I've gotten better, but I still have some weakness. Apparently muscle weakness and low back pain are side effects, but for me they were pretty severe. Not sure if anyone else had that, but that was my experience.

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          #5
          Palmtree,

          I used Ampyra for 7 years, but since I have continued to progress, I decided to try going "without". I've been doing that for a few months, and I've decided Ampyra/4AP no longer is helping (or I was experiencing the placebo effect for 7 years). It helps a third, works a little on a third, and is no help at all for a third. I experienced no negative effects that I am aware of.

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            #6
            When I first started it, it seemed like it was helping a ton. Everyone was noticing how much faster and fluid my walking was. Then, it seemed to level off. Lately I have missed a dose here and there and my legs are so wobbly I cannot stand up. Scared.

            Will see doc in February and I will let him decide whether I should keep taking it. I think I will try a very strict timing regime to see if it will make a difference. Right now very scared. What if I have to go to a wheelchair? That will turn my life upside down because I don’t have the resources to build a handicapped accessible home.

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              #7
              Originally posted by palmtree View Post
              When I first started it, it seemed like it was helping a ton. Everyone was noticing how much faster and fluid my walking was. Then, it seemed to level off. Lately I have missed a dose here and there and my legs are so wobbly I cannot stand up. Scared.

              Will see doc in February and I will let him decide whether I should keep taking it. I think I will try a very strict timing regime to see if it will make a difference. Right now very scared. What if I have to go to a wheelchair? That will turn my life upside down because I don’t have the resources to build a handicapped accessible home.
              Thanks for the update. I am really sorry to hear it seems to have leveled off. I hope that being more diligent on taking will help get some benefits back.

              Can you contact the NMSS and see if they have any programs for helping adapt a home? Maybe other groups in the area?
              Kathy
              DX 01/06, currently on Tysabri

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