Ampyra for Multiple Sclerosis Week One

Ampyra (dalfampridine), known as the “walking drug”, is a treatment to improve walking speed in patients with multiple sclerosis. In clinical trials it increased the walking speed of over a third of the patients.

As you see by my video, I walk VERY slowly. I use my walker most times, and always when I am outside the home. When I walk around the house with my cane, it takes almost one full minute to walk 30 feet.

When I practice by lifting up my cane, I can walk about 10 baby-steps before I need to catch myself quickly setting the cane down for support.

I make myself get up and practice walking periodically throughout the day. I’m having so much fun working online, it takes serious self-discipline to get up and practice.

I realize that it is too early to tell, but I’m excited about the possibility of walking again!

It’s really wild that I’m the strongest in the evening, walking is easier then.
Now I have to do the work, the physical therapy!

I’m grateful that Holly Fulford-Jeffery created instructional videos and encourages us to do these simple routines at least 2 times a day right at our desks. The stretches she demonstrates really help the stiffness, but I still have to get up and walk!

The beauty of Ampyra is it can be taken with any of the other ms drugs. I’ll be switching from Copaxone to Gilenya next week. I look forward to medication with no injection! I’ll do another movie next month and let you know how it’s going.

Have you used Ampyra, or do you know anyone who has? Leave a comment below and join me at msrelief on facebook too!

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

15 Comments:

  1. congrats on your progress. I’m hoping to be on Ampyra soon,

    • Ricardo~
      Hey I looked briefly at your blog~ thank you for visiting mine! I love this community online, it’s a blast! I’m greatful that I can get around! I’ll make another movie on the first… don’t get your expectations up!
      When do you get to start Ampyra, what’s the hold up?
      Linda

  2. I went to a lecture/dinner on Ampyra and they said not everyone always responds to it. I hope you continue to do well!! I’ll be looking forward to hearing about your progress 🙂

    • Hey Lisa,
      The Ampyra is working well for me. If I am late (like I was tonight) I slow WAY down. It’s not like I’m ever fast, but I feel like I’m dragging… more than normal! If I miss a dose, the physican said I can take it up to an hour later then start again the next time on time. Tonight I went to an awesome MS event and forgot to take my 8 pm dose. I meant to take a pill with me but you know the forgetfulness thing! I pushed it and took it an hour and 45 minutes late. I’ll just wait unil 8:30 in the morning than by tomorrow night I’ll take it at 8 pm again.

      The event tonight was put on by copaxone. Dr. Ronald Murray talked about Treatment Strategies and it’s very exciting what’s being studied! As soon as I get time I’ll write a post about it!
      Linda

  3. I’ll be starting Ampyra next week, i really dont know what to expect, just hoping that i can move a little faster, and not using my cane so much, i switch from Betaseron to copaxone, and i just got another lesson on my low back, what i should do?

    • Jhon,
      I wish I knew! MS affects everyone differently and medications help some people more than others! Shoot, even Ampyra only increased the walking speed in just over a third of those who were tested! I look forward to hearing if Ampyra helps you! It does help me, but I still can never make it to the phone before it’s hung up!
      Linda

  4. I started Ampyra last week (5 days ago) and it seems to work for me. My walking has become quicker and more confident. Also I have fewer muscle spasms in the evening.
    My feet tingle, but feel warm, which makes a change from having cold feet!

    • Nanda,
      It’s exciting that Ampyra seems to be working for you ~yeah! It’s doing the same for me!!! Tell me, are you walking without a walker or cane? I’m using a walker, and grateful that I can go anywhere that’s handicap accessible. When I miss a dose of Ampyra I can barely walk even with a walker!
      Linda

  5. In some cases of Multiple Sclerosis, Ampyra did deliver its effectiveness. The sad thing is not all gained the same good results as others. It is a good thing that Ampyra worked for you.

    • Candice,
      I am very grateful that Ampyra is helping me! I have an alarm set my phone for 8am and 8pm so I don’t forget to take it. It’s really not necessary because about 7:30 I start slowing down and I look at the clock and Yep! It’s time for my potassium channel blocker! I have to say there are other drugs that don’t work for me. The biggest disappointment was Tysabri. oh well, it is what it is!
      Linda

    • Candice,
      I am very grateful that Ampyra is helping me! I have an alarm set my phone for 8am and 8pm so I don’t forget to take it. It’s really not necessary because about 7:30 I start slowing down and I look at the clock and Yep! It’s time for my potassium channel blocker! I have to say there are other drugs that don’t work for me. The biggest disappointment was Tysabri. oh well, it is what it is!
      Linda

  6. Jill Wasmund@Ampyra results

    Ampyra does an excellent job with helping MS patients walk better, and with more confidence! I have taken Ampyra for almost 6 months now. It not only gives you greater control of your gait, it also improves your energy level, i.e. less fatigue! Ampyra is a win-win for my MS (Secondary Progressive).
    Here’s to Healthier MS Patients!!!
    Jill Wasmund from Tampa, Fl.

    • Jill~
      Thanks for taking the time to comment~ yes indeed! Ampyra really does help me with mobility and fatigue! I don’t have any negative side effects and it is truly a helpful pharmaceutical! I see you specialize in Ampyra results, I understand it doesn’t help 100% of the people who take it, what do you know about that?
      ~Linda

      • Jill Wasmund@Ampyra results

        Linda,
        My pleasure to comment on effective meds for those of us who face MS!! My specialty, though, is only that of an advanced researcher of MS. “Walking better matters,” and Ampyra is the only treatment to improve walking (walking speed only was proven, at least) in people with multiple sclerosis. In the 2010 clinical trials, results showed improvement in walking speed of 34.8%-42.9% of patients treated vs. 8.3%- 9.3% that were given a placebo.
        Speed, however, can also include falling faster, as one neurologist put it in 2009, when he advised against it for me. Seizures are a very serious side effect for some, as well as urinary tract infections, trouble sleeping, dizziness, headache, nausea, weakness, and problems with balance. Except for the seizures, the rest of the side effects are pretty much standard MS stuff, right? =)
        My Motto-Attack MS w/Knowledge and Humor! It is how I keep me Me and MS a smaller part of Me.~Jill Wasmund

        • Jill~ Yes you are right, all standard MS stuff! I understand your Neuro’s caution but it really doesn’t make sense~ having the ability and choosing to walk with caution is where it is for me! Having said that, my most serious falls were when I was feeling so well and moving so quickly! I did learn (took me twice) to slow down and pay attention!

          I’m glad you reminded us of the side effects and the numbers ~ I am glad that I’m of the minority this time!
          ~Linda
          ps. I love your motto! I agree knowledge and humor is the way to go!

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