Ampyra

One of my MS symptoms is difficulty concentrating when there is any background noise.  Noise includes talking, music, television – anything but silence.  This is most intrusive when I’m doing anything that requires counting (cooking, baking, balancing the checkbook, etc.).  I used to play music often.  I like having the television on, especially when I’m home alone.  However, if I am trying to comprehend something, any noise anywhere near interferes in my thoughts.  It’s not that I hear the background noise instead, it’s that I cannot hear the noise or hear the thoughts in my head – instead they merge together, creating a most unpleasant static, preventing me from making sense of anything.

static

Sitting in a group with more than one conversation going on usually finds me moving my head left and right trying to follow enough words in either direction to decode at least part of one conversation.

About a year ago, my neurologist suggested and then prescribed Ampyra to see if it might improve my walking.   I took it for awhile and then did a test that the doctor suggested, stopping it for a week to see if there was any difference in my walking when taking and not taking it.  There was indeed improvement in my walking while taking the Ampyra.  I was far from speed walking, just a bit faster and steadier with my walker; but any improvement was welcome.  During that test I realized to my surprise that there was significant improvement in my clarity of thinking.

brain3

Conversations were easier.  I could think of words and places without such long delays.  I felt sharper and thoughts seemed to be clearer and move faster.  Again, not a miraculous change, but a noticeable and welcome one.  At my next appointment, the neurologist asked again about Ampyra’s effectiveness.  I asked if he would think if I was crazy if I told him it helped me think.  He said they were actually doing a study on that very thing.  Interesting.  Unfortunately, Ampyra is about as expensive as the disease-modifying drugs.

Wondering what other people’s experiences have been.  If you’re taking it, please comment to share.

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About Climbing Downhill

Wife and mother of grown kids, in my 50's and dealing with MS, making life's moments count and trying to offer something of value to others along the way. https://climbingdownhill.wordpress.com
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6 Responses to Ampyra

  1. This is funny:) Yes, I am on Ampyra and don’t notice any cognitive connection. Walking more stable, but is that the Ampyra, or just time. I am NOT however, planning to stop.
    The funny part is that one of my favorite lines when I taught school was, “shhhh (to kids talking out of turn) you’re like static in may radio!” A great description and the kids “got it”. One who is in her 30’s now, reminded me of it on facebook 🙂

  2. Yvonne says:

    Very interesting. I don’t have mobility issues with my MS fortunately but I know exactly what you are talking about with the noise/clarity issue. I like how you phrase it. Too bad Ampyra is pricey but good to know about this added benefit..

  3. Catherine says:

    I also take Ampyra. I do have some improvement with my gait, no noticeable cognitive improvement. I’ve had these issues for years now. A standard joke with my family is at least I have an excuse now, MS! lol My fatigue is definitely improved!

  4. Barbara Kidder says:

    This is my first time visiting your blog.
    Your Ampyra post is very interesting and I shall continue to read your other articles.
    I, too, have been taking Ampyra for over a year. Upon stopping it for a week, I did feel that my walking deteriorated., and so resumed taking it.
    It is an expensive drug to take if you are not really sure that it is helping you (according to the literature, it works for about 40% of patients). As I am not on a DMD (and no other meds.), I feel the cost is worth incurring.
    Thank you for your time and efforts to share your knowledge and encouragement.
    Barbara Kidder

    • Glad you visited, Barbara, and I appreciate your comment. I thought the effectiveness was a higher percent – I feel fortunate. Doc did have me do a walking test without and with for comparison.

  5. Grateful for all of the comments left here. They are interesting to me and I hope helpful for others.

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