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Ampyra. Wasn't really able to walk.

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    Ampyra. Wasn't really able to walk.

    Ok all my MS had gotten to the point that I couldn't really walk much anymore and if I could I'd end up falling out. And my spasms where so bad I'd be just laid up in bed most of the time and it has been such a struggle. I used to be so active even when I'd have to swing my left leg or drag it. But it got to the point with my legs that I couldn't even stand to pee allot of the time and still I get like that in the afternoon. But after starting ampyra I've been trying to walk more but I still get so afraid because I still keep falling even with using a walker. Just not everyday like before.

    Now before this med I'd get these spasms that would last for hours on end. And what I call my spasms are like this. I'll be laying down and all of a sudden my left arm and leg will just start jumping around and then straight up in the air. Sorta like doing leg lifts. But I'd be lucky if I can lift my legs 6 inches to a foot before the medicine. Even with the ampyra I have trouble with the leg lifts. And I'm still having falls. This past Sunday I fell twice and yesterday once while using the walker.
    Now from some of what I've read is that the medicine can cause kidney failure along with seizures. Haven't had no seizures. But like Saturday during the night my bladder gave out on me. I don't think that has anything to do with kidneys does it?

    My biggest concern is that I might have to stop taking the medicine and then I'll be back to being stuck in my wheelchair and bed again and all I want is to get better so I can try and be able to try and take care of myself instead of having to have help to get in and out of the shower at times as well as to get dressed and not be able to stand very long to even cook for myself. Now I only started this medicine last Friday. And it's like someone has flipped a switch to make my nerves work properly. And the other issue is that I don't think my insurance will cover it again. I have Medicare part D for meds. Anyone else go from not being able to walk to being able to after starting ampyra?


    First, I encourage you to read my post in the thread Ampyra if you haven't already. By the sounds of it, you might be in the 30% of those who see a marked improvement with Ampyra, and that is a good thing.

    As far as seizures or kidney failure, I was personally on Ampyra for 6 years, and I never heard or read of anyone experiencing these. Remember, companies have to report ANYTHING negative that happens with a drug, even if it only happened once. You should always be cautious with a drug, but don't get too worked up. I actually made the mistake of taking an extra Ampyra, forgetting I had already taken one, and I was just fine.

    Yeah, Ampyra is an expensive drug. I actually quit once I knew it wouldn't be subsidized under Part D, and I just didn't see the value to me at that point in time. I actually transitioned to 4-AP, the compounded form of Ampyra. It was the precursor to Ampyra, and the only difference is Ampyra is extended release. Instead of one every 12 hours, you take one pill every 3-4 hours, depending. This actually gives you more control of the drug.

    4-AP can be purchased from a compounding pharmacy, and I paid $46 including shipping for 120 pills. I used Skip's Pharmacy in Deerpark, Florida. I could recommend you give 4-AP a try to see if you still have a positive effect.

    I eventually quit 4-AP because I just didn't see the positive effects you are seeing. I hope it continues to help you.