I've had problems/ side effects from it when I started it in 2011; so I stopped it, even though it did help me walk better!

I have been walking very badly for a few months and restartd it in November 2012 with just one pill a day to try to not get alll the bad side effects that made me stop. It seemed like it was working quickly again to help me walk a few extra steps. It did hurt my back somewhat again, so I stayed taking just the one pill to help me walk a little. Just one pill did help to steady me so that was great!

Then one day (Feb 8th 2013) I decided to try to see if I could take the 2 pills a day and be OK with the back pains and everything else it once brought me and I had to stop,

It seems to actually help me walk a little bit farther now with taking the 2 pills a day. I still do have back pains, a few urinary tract infections, have insomnia and headaches as side effects, but I have NOT felt horrid flutterings in my chest as if it was bothering my heart so far.

So right now I'm a bit of a reccomender of the spooky newer drug; Ampyra for some help with MS walking/ standing problems

Best of luck if you decide to try it.

Thanks so much Princess for your info. How has it helped you with walking? i.e: How far can you walk now?

Well, it's not very far. But I can walk out to the kitchen without the walker/ rollator or even need my fore-arm crutches to go the 7 - 10 feet in the house!!

I know it sounds silly, but because of the pills, I also can slightly move and stretch out my pinkie toe on my MOSTLY NUMB and unable to move most days, right foot!!
I noticed that startin for me after I was taking the 2 pills for just 2 weeks!
I'm hoping that it will help me use the fore-arm crutches to walk out in public after a few more weeks/ months instead of needing the walker/ rollator and embarressing my friends with looking as ill as I do, to them.

Taking cranberry supplements have seemed to stop the UTIs that I first got because of the pills and am very afraid will happen again, just Tyenol seems to help the back pains I have from them now; back in 2011 I was taking toooo many Vicodens and those bearly helped the horrid pain.

I hope good things happen for you!

You are not embarrassing anyone; you are inspiring me! Thanks so much for your help :-)

I have been on Ampyra for a year and I walk with a walker ( I used to walk walk. ) and without the Ampyra I can only walk a few feet. Now I can walk all over the house. My body sure tells me when it is time to take the second pill.

Good luck if you decide to take the pill. Insomnia is my only set back!

It *was* helping, even though the sleeplessness was difficult to get used to. I took it for a bit over a year and a half, but it turns out I started having little seizures without realizing what was happening.
Ampyra gives MAJOR warnings about this.

Not to beat a dead horse, but I almost WAS a dead horse when I had a full-blown Tonic-Clonic seizure while driving on a Houston freeway. I remember being worried that I was running late, and then, POOF, I woke up in a hospital later that afternoon. Apparently, I was being quite belligerent and had to be restrained!

Why my neurologist didn't immediately have me cease and desist taking this, I do not know, but I stopped it myself. The walking is quite a bit slower and shorter in range, but I have not had a seizure of ANY type since last August. Different things certainly react differently to different people, but NO MORE of this for me! [Bummer, that...]

my neuro wants to put me back on ampyra even though i don't really walk but about 5 feet on my walker anymore without having to sit down.
i don't recall having any major side effects. i was just sleepy until i got used to it. it really helped with my walking.

I CAN ONLY WALK A FEW MINUTES WITH MY WALKER. FOR MY DOCTORS APPOINTMENTS I GET LET OUT AT THE ELEVATOR I SIT DOWN I GO INSIDE THE ELEVATOR I SIT DOWN ..I CHECK IN I SIT DOWN. I WAIT FOR THE DR. I SIT DOWN..

I HAD TO USE MY SCOOTER LAST TIME SINCE I HAD BACK TO BACK APPOINTMENTS

I'V BEEN TAKING AMPYRA FOR A YEAR .I THINK IT HELPS ME RECOVER FROM FATIGUE

Just an update,

Well, it's been 82 days now that I've been takin the 2 pills a day of this spooky drug. Tonight I fell AGAIN and needed people to help me move because of my suddenly weak feelin hands and leg! This is IT FOR ME to take the second pill everyday! My "GOOD" leg (the not numb left side) keeps being WEAK and my hands too! As in NOW I have the WEAKNESS side effect of this spooky drug!!

I know that ANY drug that you take, could have side effects. They have to list them all on a chance that it might happen to you. Even simple ones like this drug says "Nausea, headache, dizziness, indigestion, constipation, back pain, weakness, burning, tingling, itching..."
Many people read those possible side effects and just figure "Ehh, yeah thats every pill... that doesn't matter not everyone gets it... If it's supposed to work really good I'll try it out!!"


Man who woulda thought the back pain that was so severe and heart flutterings that made me give up this drug a year or so ago woulda felt BETTER to me!!?? Back then I could walk so well VERY shortly AFTER I started using the Ampyra, I hardly needed to use only one fore-arm crutch; It felt terrible to stop it.

Best of luck for anyone that is starting to use this drug, or is using it already!! You need to REALLY pay attention to your body!!

Princess, I'm so sorry that you fell :-( Can this be due to MS? I hope you feel better and thanks so much for the update!

:) Thanks for the note to me PharmD.

That's all that I really thought it musta been the first 12 times I fell in my apt. or at my parents house too! I was just figurein it was just WHY I NEEDED to keep takin the pills and was very much questioning myself about why I didn't accept the RX that my neuro said he could let me have to make sure I had enough to keep a bottle at my parents house and one up at my apt.too, so I wouldn't run out. He was saying about 90, 180 even 300 he would trust me to not overdose myself, but I said "ohh, the 90 pills would be fine cause I'm JUST goin to take ONE of them a day, I'm scared of the seizures and how bad my back felt back when I first tried it!!....."


Now the numb hands REALLY have gotten a bit less to feel for me EVEN with my not taking the one last night.!! AND the INSOMNIA that I KNOW I started having with the racing thoughts that came on me when I am trying to sleep WEREN'T THERE sooo much last night too!!
I seem to be HIGHLY side effect prone to this spooky pill. So I'm hoping that taking the one pill will keep me feeling steadier than how MS always causeed me to feel.

I really do wish all others well with using it!!

Ok so kind of embarrassing but I just started taking Ampyra this past Wednesday and after an hour or so of taking it I developed a huge sudden urge for sex. I haven't had this much sexual drive even when I was a teenager. It feels like I'm on the verge of climaxing. The feeling never goes away. I've read where this med helps with releasing chemicals that are released when bein aroused. Wondering if it could be the Ampyra doing this or if for some reason I now just have this new symptom. It's not very fun at all to have it. It's like having PSAS syndrome. Absolutely nothing will make it go away or will help with relief. I have only taken two days worth of it (4 pills) and its been 2 1/2 days since I took the last pill. Shouldn't the medicine be out of my body now? I did feel better while on it, but don't want to take it anymore because I think Ampyra may have caused this. Any help? Desperate!!! Thanks!

As my neurologist's 'comforting' words noted, "It affects everyone DIFFERENTLY." Not sure if this 'different' aspect is good! It gave me seizures, and I was still having little ones for a couple of months after STOPPING this. It appears that is may not entirely come out of your system RIGHT AWAY. As you said, "I did feel better while on it...", but in my case, it was not worth the cost [and danger!].

I saw a new neurologist yesterday & he asked me if I had ever tried ampyra? I felt totally at a loss~had no idea what he was talking about. He wants to start me on this in March (the delay is because he wants to start me on Tecfidera first) but after reading the comments on here & not seeing or hearing much about this drug previously I am not sure what to think.
Since this original post was back in March does anyone have any new info or experiences w/ampyra?
Seizures?

For me, it does do irratating things to me and not help me walk, stand enough.
Like the UTIs that all the crannberry supplements, dried cranberries I eat just don't keep away; also my mind just WOUN'T STOP all the extra worryin whenevea I TRY to sleep for the night and I am just taking ONE of these pills every morning for the year and a half now!

The side effects of almost any stronger drug just get to me. People just need to figure it out on their own; cause not everybody gets the side effects.
Good Luck to anyone usein it.