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  • Joani

    Why should I take Ampyra is my balance and coordinaiton are already very unstable?  Two of the side effects are dizziness and impaired balance.  When I asked my specialist what could help with wlking, he suggested Ampyra knowing I have extreme balance and coordination issues.  We also talked about an AFO for m\the drop foot issue I have had for almmost two years.  

  • saildawg69
    Hi my name is Art and i have had dropfoot for 3 plus years. Here is what the Va. thought, i had a lunar root being pinched off. So they did back surgery on me for no reason. I still have severe dropfoot and a hollowed out bone where the root travels through. All they had to do is mri on my brain,neck, and upper spine and would have figured out that i had m.s. so i dont trust too many neuro's out there. My balace and coordination is also off. when my left foot gets tired i trip on small things alot and fall. Im 43 yrs. old and use a cane to help me walk. I was also in a wheel chair for 3 days. This shouldnt be happening to me at this age,soo i know how you feel and its very scary. Add me to your connection list. TTYL ART
  • MS_Navigator_Robin
    Hi there,

    You're absolutely right - Ampyra  is approved to improve walking - trials discussed on our website note that "improvement" was considered to be an increase in walking speed - but dizziness or problems with balance are listed as possible side effects.  If your physician hasn't adequately addressed your questions about whether this treatment is a good option for you, the staff at the patient assistance program might have some helpful information: 888-881-1918.

  • melms
    I've been dx'd for 24 yrs. and have experienced many meds for symptoms, etc..  Ampyra is the drug that has helped me most in regaining function.  I am still in a wheelchair but I can now stand by myself, roll over in bed, climb stairs w/railings, and other things that are little to others but huge to me.  It's different for everybody but I love it !  And it does help me with foot drop.
  • rbmom

    I agree with you.  Before I started taking Ampyra I could walk 25 feet in 22 seconds - with a walker.  3 months later I could walk 25 feet in 11 seconds - doubling my walking speed.  I still need a walker (and scooter for any long distances) but it is about 4 years later and I'm still walking in the 9-11 seconds time.  Ampyra does not cure anything but it does keep me active and mobile.

  • dondr
    me too... me too!
    in fact I went off Amptrra for three months because when the doctor asked me if it was working, I was sure it wasn't working.   I thought PT was the only thing helping me.
    But then I plateaued in PT and guess what my legs were stronger, but I still couldn't walk and balance properly and there was no change to my drop foot. I was (and still am) at the mercy of a wheel chair  and a walker.

    And then my light bulb when on.
    I got back on Ampyra and little things are happening.

    I now have a schedule on the computer that forces me to record my exercise activies on a daily, weekly and monthly basis.   and shazam this schedule is showing me my own improvements.

    I am not cured or perfect, but I gave myself a good reason to feel good about myself and all the things that are coming my way.

    I still drop just about everything I touch, but now I laugh at myself, because I know I can pick it up. Sometimes I do it right then and other times I come back and pick it up.  But I always come back because I know I can.

    In fact a few weeks ago I drove to an appointment I had close by, and when I went to get out of the car I reached for my walker and found that I had forgotten  it.

    Did I laugh at betcha!  I went home and got it and still made the appointment time.
    When I look back at this I say that forgetting my walker was not a denial of my disease, it was me feeling pretty darn good about me being ahead of it.

    Do I owe it all to Ampyra...I don't know, but what I do know is that progress started  happening for me when I went back on Ampyra.

    Hope this helps!

    Good luck in your recovery! 

  • tuffy8

    I have been taking Ampyra for last 3 months and it has greatly increased my life.  I was having trouble with tripping and having falls.  Have not had any since I started this medicine.  Have not had any side effects that I couldn't handle- like headaches.  No dizziness.  This medicine has saved my life.  I still have a job and now have the energy to do it better.

  • meme59

    I had trouble with stairs, stooping and balance.  My doctor put me on Ampyra about a year ago and now it's easier to climb stairs and stoop and be able to stand easier.

  • lm333

    Hi Joani,

    For what it is worth, and I am not a clinician (but I do work in the pharma industry), the side-effects listed for any drug are "potential" side-effects only. They are not guaranteed. Review the package insert data and compare the incidence of dizziness and impaired balance reported in those taking Ampyra versus those on placebo. What is the difference and is it significant? 

    I had balance issues before going on Ampyra and found that the increased walking stability (as a result of taking the Ampyra) helped my balance. 

  • hope2015
    1/25/16 findings:   On Ampyra since Oct 2015.
    Has it helped: Yes
    Side effects:  No changes of any issues I have already
    Findings:  It made my betty spaghetti legs go away. Don't expect to 'walk' like you used too BUT until you experience 'betty spaghetti' legs, it might not work the way YOU want/need it to.
    PT:  for a few years my MS dr wanted me to try PT but "I know what I'm supposed to do" so kindof thought why bother or who has the time or I need a ride its inconvenient.
    PT helped- Go to the right kind of therapist, took me six places as most are for sport injury related therapy- be sure they deal with MS /neurolgical issues. It makes a difference, just like MS drs etc.
    Bone Strength: Both together = great results. Use heels,lean on my thighs to get up, learning useful helpful ways that are common sense after we are retaught these ways. Just try PT-did it every 10 days for a few months with using the techniques on the paper they wrote out/drew for me- simple enough but it helped ALOT.
    Remember: Use it or lose it really is true, so I was pretty good with doing it everyday then ya know not practising the PT sitting alot- DO IT EVERYDAY, but taking the 2 pills 12hrs apart (amazing how remembering that can be difficult- thank God for phone alarms) So I'm going to practice what I preached today and DO what they suggested instead of looking at the sheet. Both together have helped and strengthened my muscles that were gone. No not a magic pill but medicine that helps many, not everyone but I'm glad I revisited trying it with PT (only 6x) together I found approaches that have helped. Just suggesting as it might help one person. I know I'm faster and leg bones stronger and yes I still use a rollator, cane or arm...small steps matter, just ask the parent of a one year old lol !
    Don't really have foot drop but learned to take better heel steps and to pick up my feet when walking. Sorry don't know what helps best with that.
  • Davids
    I started taking Ampyra because I had taken copaxen shots and Avonex shots had bad reactions (panic) atacs that lasted for hours. The ampyra doesn't do that to me. Am still able to walk very short distances with a walker, I can walk stares with rales. I didn't notice any difference with balance or dizziness. I was already having those problems before. Sometimes you just have to go with what your gut says, hope and faith. Helps me. 
  • adillon845
    Hey Joani,

    I completely understand your hesitation. I was beyond fed-up with how poor my balance and walking was so my neurologist told me to give it a try for 2 weeks and come off to see if there was a difference. I didn't think there was too much of a difference but after the third day of face-planting, maybe it did. I'm pretty faithful with my Ampyra and feel it does make a  difference. 

    Lots of luck! Any questions let me know!!

  • jasonprestovfd
    I tried it...
    I got benefit from it starting in week 3, I stopped dragging my left foot. But then the lower back pain was to much to continue it. About 5 weeks  ago I stopped taking it but the lower back pain hasn't gone away yet.
    I love that I don't drag my foot, even though I still use a cane to walk. I've been through enough back pain and surgerys for one lifetime...
    everyone is different, I'd still say try it if it's an option. 
    if we don't challenge MS it will win!
    Surrender is NOT an option!!

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