How's everyone doing on Ampyra?

[rosepetals]

Hi Everyone

I am finally doing better. I believe the ampyra, provigil, and cerefolin is making a big difference in the MS. My enegry is improving enough that I have been consistent with doing some exercise almost daily. The amount varies depending on how hard I worked out the day before. Before these meds. It felt like a struggle to move.

My strength is improving. I was able to lift a light bag of groceries into the cart the other day !!! My walking is improving a bit and my balance is improving. I still have a long ways to go. It goes a long way to improving my mood by being able to move and think a bit.

[CasinoKathy]

I am SO GLAD that your starting to feel better rosepetals!! Have been wondering how your doing. I can relate to the feeling of having your mood improve when your body can start moving better.

Sure hope things keep improving for you! I've been having more good days lately, but those bad ones sure are AWFUL!!

You are heading in the right direction that's for sure---more strength, improved walking and balance, exercising, lifting, YEA-HAH!!!

[becia]

hello everyone,

I am new on this site, I am from Australia, unfortunately in Au Ampyra in not available yet , could you tell me guys what is the monthly cost and may anyone knows how i can buy it. do i need prescription or something. any information will be very helpfull.

cheers

Becia

[calicorox]

The good outweighs the bad... sometimes

I was diagnosed with chronic progressive ms about 6 years ago. I started Ampyra on Aug. 9, 2010. I noticed an improvement the next day. I walk with a walker and I was walking steadier for longer periods of time and the use of my right arm improved. As days went on the improvements lessened. Now I have good and bad days and sometimes and good and bad hours. The good outweighs the bad so I will continue with the drug. I just don't understand why it was so great at first. Please respond if this has happened to you.

[Jenna]

me too

I noticed significant improvements too, but for me it was after about 5 weeks. My foot drop and my heat sensitivity were greatly improved. I could walk-still with a walker, but with better strength and balance. Then after about 5-6 weeks, the benefits started to lessen. Now, after about 5 months on Ampyra, the benefits are still there, but very inconsistent. I mentioned this to my Dr. and he didn't seem all that surprised. He said it seems to be helping based on my neuro. exam. So, I'll be staying on the med.

[Griff]

Haven't see many posts lately, just wondering how you all are doing, whether good, bad, up and down, or the same.

For me, my weak leg is stronger, it sure is nice to be able to move it around in bed and be able to pull it up when reclining in my chair.

Alot of small improvements, but sure have been having trouble walking (normal for me). When I am walking better around the house though, the weak leg is moving faster and the foot is lifting higher. I just wish it would be more often.

On occasion I do find myself walking from room to room without using my cane. Balance is up and down, only improvement I've really noticed with that is in the shower.

I started out with improvements really fast, guess I got spoiled!!

Hope everyone is seeing some improvement-- as with all meds, I know our bodies react at different speeds.

I took it for 60 days. Went into relapse. Have not returned to where I was. Could work for others, though. Griff

[howies mom]

My neuro. has prescribed this drug for me and i'm still going back and forth about wether I want to start it. Wondering if anyone who has had MS for a long time, like over 30 years, has experienced good results.

Thanks for any feedback any one can provide, Sue

[coral12]

Ampyra have had ms since 1982

I started taking ampyra beginning of September, . I love it! My back is not so tight. I walk better. My foot drop is much better and often do not wear my brace. I am a swimmer and am now swimming twice the number of laps I once did in the same amount of time!
I started out taking two pills a day but after nine days of only getting 3 hours of sleep a night I went to one pill a day.don not think I will return to two pills. My dr suggested takin the meeds nine hours apart vewrsjs twelve, but the fear of seizures made me mot go there. I thi k I am. Ot seeing a y new changes but am satisfied with where I am.
,y ms be ame se nondairy progressive three years ago. I was on chemotherapy for two years to quiet my active ms down. Now with copaxaone and ampere I am ready to start having fun again
Coral 12

[CasinoKathy]

Hi coral12, glad your seeing improvements with the Ampyra! That's great after having ms since 1982, when there were no drugs available to treat it.

Here's hoping you'll be having alot of those "fun days"!

[okcokguy]

I'm SO encouraged!

love your comments coral b/c I'm a swimmer too. I'm starting Amprya tomorrow and have been taking Copaxone about 11 years. The left leg just hasn't been lifting even when swimming and especially walking. Will let you know how it goes.

[howies mom]

Thx. for your feedback Coral, Sue

[Giacomoperti]

So far

I'm on my 6th day of Ampyra. So far the only effects are increased leg pain, dizziness and fatigue. I have great hopes for this med, as I can only walk about 20 feet with a walker, and it takes 5 minutes. I'm also hoping it will improve sensation in my hands (I'm a guitar player, and can just barely feel the strings).
Any advice for the dizziness and fatigue? And has anyone gotten any decrease in numbness from this?
Thanks,
Larry

[CasinoKathy]

Hi Larry, welcome to MSWorld!

I have not had any bad side effects, been on it since July 1. I know it has helped with the spasticity in my weak leg!

Also I don't get the late afternoon fatigue as much as I used to.

Good luck with the numbness-- I LLOOVVEE guitars!! Hope you start getting more feeling back in your hands real soon!

[Imagine]

Much Thanks

Thanks for such a positive post; and I am so happy for you that you have gotten some relief! My neurologist mentioned this drug when i WAS ON MY WAY OUT THE DOOR! I declined b/c I was very much opposed to yet another Rx. Since reading the posts on this site, however, that is 1st on my list of things to do tomorrow-- call and request/DEMAND (if need be), an Rx for this drug.

Cathy, you are always so positive, and I truly appreciate that. I have had a really rough 4 days, and reading your post has given me some hope and a ! Please do not let this comment deter you from expressing your hard days!!!

Thanks to all of you who shared your experience. Be Well; Love and Light...
Shalom

[Giacomoperti]

"I have not had any bad side effects, been on it since July 1. I know it has helped with the spasticity in my weak leg!
Also I don't get the late afternoon fatigue as much as I used to.
Good luck with the numbness-- I LLOOVVEE guitars!! Hope you start getting more feeling back in your hands real soon!"

Thanks! Any guess on how long it takes to kick in for most? I haven't tried playing yet, but I think I will today. (to see my band, formed in 1967, search YouTube under "Cinnimon Haze.")