Amphrya

[LATW]

I can walk better!  But am over doing it. :(  

Anyone else seeing any good results with this med?  I wonder if it keeps working or stops after a while.

LA

[Sarahsmom46]

One more thing I fogot to mention...I overdo it too because I am feeling more confident.  We have to be careful about that as Ampyra only helps us walk better it doensn't do anything for the fatigue.  Fatigue and walking don't go well together at least not for me.

J

[Sarahsmom46]

I have been on Ampyra for 3 months now and am having great success with it.  I took a few weeks before the full effect was attained, but it has made a difference in both speed and quality of my gait.

My neuro asked me how I'd describe the effect and I compared it to walking on those moving walkways at the airport versus walking on your own with all that luggage.  So much easier than before when I walked slow and my felt I had to drag my legs along as I went.

The only side effect I am having is more acid reflux than usual.  That is easy to control though so I don't consider it a real negative.  

I hope it continues to help you.  As for me, I'll stay on it until it stops working. It is definitely worth it.  

Take care.

Julie (Sarahsmom)

[sllowe]

Yay! You needed this break!

Our forum member, MarksMS has had positive results from Ampyra too.
Maybe he'll share again.  If not, it should be fairly recent in archive discussions if you feel like looking it up. If you can't find it, just hollar, I'll search it for you.

-shell

[LATW]

Hi ess,
Oh yes, a better frame of mind, a healthier feeling, less of an appietite (which is great for me!), more endurance for walking longer distance but I am not sure I walk a lot faster.

I have noticed I do not stumble but I still do not clear the ground totally.  I scuff my feet along.

I have been able to go to my sons foot ball games because I can walk a longer distance!

That has been great!

I have found no down side to this medication.  I just wish I could ditch the DMD.

I was on Provigil for about 2 years and it does not compare to Ampyra.  

Hope your doctor can get you started on it!

LA

[essdipity]

Hey LA, I'm so glad Ampyra is helping you. How cool. From what I've read, the med works as long as you keep taking it.  Lesson to be learned---don't stop!  :-)

Throughout my life I've been a pretty fast walker, just whisking along ahead of others. I'm not that anymore, and can't keep up with the younger members of my family, though after all, I'm not exactly 18 anymore. Recently my MS NP said I was walking slowly, which I wonder about. I think maybe I misunderstood what she wanted me to do, so I was keeping my gait to hers and she was doing the reverse. Maybe so, maybe not. But the case notes reflect slow walking.

What's really drawing me to Ampyra, though. are reports from others about increased energy, better frame of mind, and all round emotional improvement. That would be so great for me. After jumping through hoops to get Provigil, I find it really doesn't help. It keeps me awake, yes, but with no energy and with a wired sort of feeling. Blecchh.

I know the new comments about Ampyra are only anecdotal, but I'd love to hear what anecdotes you have. You and everyone on the forum. I do understand that only half of patients on Ampryra get benefits, but that's a good enough number to get me interested.