Ampyra - don't know if it's working??

[Seasha]

Hello, Ampyra users. I've been taking it for almost 6 months now and really don't know how to judge if it's working. A lot of you say you can tell by your walking if you've missed a dose, but when I miss, I really can't tell! Once I forgot and went for 24hours and still didn't notice any remarkable difference. I am SP.

Am I one of the percentage that my walking isn't affected? I do notice that my energy level is much better, but sometimes I feel better in spring and summer anyway. Is there any other way to guage the effectiveness?

I'm so confused. I really don't want to be taking anything that doesn't really work!!

[ME610]

Amprya

I am a teacher, who tries to save as much as possible over the school year so i don't work over the summer. Sounds like fun.. but not really.... I have enough money to pay bills but not much else... that being said,

I am not on a normal schedule, so taking Amprya 12 hours apart has been a challenge. I have missed a fair share (tonite included) of Amprya doses..... while I KNOW that Amprya has had NO EFFECT on my walking speed has not improved (tested while TRYING to RUN to my car in a rainstorm)... it has had a postive effect on my energy level. Before Amprya I was ready for bed at 8pm...now I can stay up till 10 or later. I just had neuro appointment... and a repeat MRI... all seems good. I will continue to take amprya. The energy it gives me is well worth it... even though it has done nothing for walking.

[Seasha]

Thanks ME610 - even if no one else replies to my post, at least I am not the only one!

[Tomjadg]

Seasha

I'm with you.
I've been taking it religiously for about a month with no apparent effects.
My energy has improved, but it could be because of the Ampyra or Alpha Lipoic Acid and Acetyl L-Carnitine.
I don't know which...or both.

[Windwalker]

I have been taking Ampyra for 3 months. I am PPMS.

I did not have an "amazing" improvement but felt that my energy level and strength were slightly improved...it was undeniable. The few times I have missed a dose I did not feel any significant change.

I did have some side affects after two weeks but that went away within a week. My Neurologist told me that eventually the positive effects of Ampyra will plateau. If you feel that your energy or strength has improved while taking Ampyra, if even very slightly, they probably have.
I would keep taking it, especially if it was not causing discomfort of any kind.

[katvar]

I did notice an improvement in my walking after I started Ampyra - I am honestly not sure of it was due to the medication or just getting over an exacerbation.

My walking ability can vary widely even from day to day. I keep taking the Ampyra because I am afraid not to. I could barely get around the day I picked up the prescription.

I still can't walk to the end of the driveway to pick up the mail, but I do okay.

[Seasha]

My energy has improved, but it could be because of the Ampyra or Alpha Lipoic Acid and Acetyl L-Carnitine.
I don't know which...or both.

Yeah - same here. The 3A's! You all have convinced me so I'll continue taking Ampyra. I just needed some feedback, so thank you all. The increased energy might be as good as it's gets, but that's huge in itself.

And katvar, I'm with you...my walking ability changes from day to day. No rhyme nor reason!!

[sich59]

I started taking Ampyra a few weeks ago after having been on 4-AP for over a year.

When I started the 4-AP I did notice a very subtle improvement in my walking, but that was it. It never got better or worse.

I started Ampyra because I found that the 4-AP, due to its compunded nature, would sometimes make me feel a little groggy or lethargic. I was hoping the Ampyra would change that.

After having read all these posts, it is dawned on me that the Ampyra has indeed helped with my energy level, which is rewarding in itself.

As far as whether it actually helps walking, I've found that not taking something for a few days isn't a good barometer (I'm PPMS by the way). Try not taking it for a couple of weeks or a month and then make your judgement.

That has happened to me a couple of times over the years. I've stopped doing something because I didn't think it helped, and found that by not taking it things did indeed get worse.

[Sir-Voor]

Hi Seasha,

The best way to find out if Ampyra is working is to have your neurologist judge, your neurologist should have tested and scared you in many areas just to track your progression and will be able to tell what has improved.

I have been on Ampyra since May of 2010, and it has greatly improved many of my symptoms. One within hours, most took weeks or months and one (heat sensitivity) had no improvement last year, but this year I can do stuff out side when the heat index is around 110. I’m doing a biggest loser workout, but not many 48 year olds could.

Also a few symptoms I had I did not notice improvement and had to be told things like “wow, your speech is much better.” I did not even know it was bad.

P.S. Ampyra this week finally got approved in the EU, conditionally for one year.
The drug company has one year to prove it helps more then just walking, I for one know for fact when it works it does help many symptoms.

The good aspect to the EU’s condition is that once they prove it helps more then just walking, US insurance companies and doctors will increase their approval of it.

[Sir-Voor]

oops!
I my post that should have read;

I’m NOT doing a biggest loser workout, but not many 48 year olds could.

[jersey-in-pa]

Yay!!

Okay, here's the scoop, MY scoop that is.

I have been taking this drug along w/ so many others... all
LEGAL since 07/27/2011. Perhaps I'm just a "forever
Optimist" I really felt I was walking better the day I started taking it Along with Tysabri(14 doses to date) I feel GREAT. Granted, every day is 1 extra day on God's green Earth, MS truly doesn't have me, I have it! The Dr. tells me to keep smiling & I do just that. One day at a time is ALL that I have and that works for me.

[Seasha]

After having read all these posts, it is dawned on me that the Ampyra has indeed helped with my energy level, which is rewarding in itself.

Try not taking it for a couple of weeks or a month and then make your judgement.

Hi sich! Well, I've changed my tune! I just got back from vacation (big family reunion) and my schedule got all messed up. I managed to take it maybe once a day - if I was lucky enough to remember. I did however take my ALA/ALC. I know that vacations can be exhausting in itself, but wow, my energy level dropped considerably, so I'm getting back on schedule asap and then I'll know for sure!

And Sir-Voor, that's interesting about approval in the EU.

[coral12]

Ampyra improvements

I have been on ampyra one year now. I noticed the difference after two weeks. It changed my gait for the :better,. I think I walk a tiny bit faster but that all depends on my back. If my lower back is tight I do not walk well. I use a walker all the time every day. I can not do anything without my walker.
But as of two weeks ago I have been able to take six awkward steps without my walker! I do it in the kitchen so I can grab something if needed. I had not done that in 7 years.
I'd it due to ampyra or copaxone?
Coral12

[CasinoKathy]

Hi Seasha, I first just saw your post along with Judy Z also. Have to admit that I'm not here as often as during the winter months. Not because I'm out and about walking because of Ampyra! Because I'm sitting out back enjoying the summer weather.

To answer your ? of is it working--well, I could tell right away my walking was alittle better, even using the cane though. But my balance is so bad, that my walking is slow. And I'm so tippy that I don't go out much, is just plain hard and crappy!!

But I do know that is has helped in other areas- can now take warm showers, instead of cool ones--YEA!! And shortly after starting on Ampyra I could move my weak leg up while in bed or my chair. This is without having to pick it up and pull it! And while reading through your responses, I have to agree that it has given me more energy. I know that I don't get the late afternoon fatigue as often as I used to.

I have now been on it a year. Still hopeing for improvement with the walking. Good luck to you! Casino

[grace4et]

ive been taking ampyra for about almost 2 months now and i dont think ive noticed any real difference but i just keep taking it because i dont want to experience any of the negative effects that may happen. just scared it may be doing something and i will notice the change. i started out taking the 2 a day but after a week went down to 1 a day because my body cant tolerate 2. it would make my nerves to active and cause aches and pains sometimes shooting pains all over and exagerate the pain of previous injuries usually during the night while resting. ive decided to continue to see if it will work better with time. my issues are with balance, muscle fatigue and spasticity in my legs. rrms 6 years