Useful information about Ampyra

[Joeyjelly]

I started Ampyra about 6 weeks ago

I started amprya about 6 weeks ago. I have had good luck with taking it. No side effects yet. I don't need a cane to walk.
I noticed I was thinking better and didn't have to make sure my feet were doing what they were supposed to be doing. I see your from PA, I live in Juniata Co.

I take large doses of Vit D'3,
B 12,
Apple cider vinegar,

[JennacydeL]

Thanks! I hope so too!

Thank you for the kind words October I hope to ditch the cane too, but am pleased enough with how far I've made it so far that there's no complaints for me if I don't make it that far. We'll see in 2 more weeks! Speaking of, your month is in just a few more days, so have a great one!

Stay strong fighting the MS fight!


~Jenna

[October22]

YAY!

I don't take Ampyra but I noticed your posts and just wanted to say, how wonderful! I'm so happy for you and hope you get to ditch the cane soon!!

[JennacydeL]

1 Month Update

I'm surprised with the Ampyra posts floating around that none have made it here yet now that there is a place for it

Well Tuesday marked off my 1st month of Ampyra. I think I made it to the top as far as I can go. My neuro thinks I still can maybe gain more from it as he says it's usually 4-6 weeks to reach it's potential into how your body takes to it.

So here's to another 2 weeks. Hope to continue to see improvement, but am happy even if I don't nonetheless. Today I went for a walk to our mailbox on the street and back to the door and then back to the mailbox and around the tree before getting back to the door.

My DH held my hand, and let me tell you, his hand was a lot nicer than a cane. I went to the mail so far 2x without a cane but this was the first time he got to see me go even if he did hold my hand. It was nice to walk hand in hand.

I went to the mall last week made it to the far end and back only stopping to sit 2 times for just a couple of minutes. I had my cane though. This weekend I'm hoping to talk DH into a trip around the mall holding hands.

He danced with me the weekend before last and held me so I could close my eyes and not fall from my awful balance issues. Even they are starting to get better.

I definitely recommend talking to your Neuro if you have walking issues about Ampyra. There's more than half a chance that you'll see some improvement. That's better than none, and not ever trying at all. I am blessed and thankful to of made it this far. I hope to be able to ditch the cane in a couple more weeks. If not, I'm still grateful.

I remember being so afraid to try this because of the possible side effects, but between people and the support I got here at MSWorld I judged the benefit to outweigh the risk and am glad that I hunkered down and took the 1st pill (after staring at it for a half an hour lol)

Well, I'll keep checking back and also update in a couple of weeks as well to see what % I made it to and if I'm stronger enough to not need the cane. I've got back most of the walk, now I just need the stamina to walk more than 15-20 minutes without my legs giving out on me.

Take care and Pats fans, we are gonna make it to the AFC 6 years in a row and also be Superbowl Bound! *WOOHOO*

[JennacydeL]

We finally got a space, pass it on! - Ampyra Update

Me again ~ I see that people are having problems finding this spot and are posting in other places not knowing about this one as of yet. If you see someone, point them out this way.

Well it's been 2 weeks, and I'm starting to notice differences. I walk faster but not for long yet. Still got another 2 - 4 weeks to see the final result. I can tell that if I'm showing signs already that I at least have made it to the "middle" group, but I'm still aiming higher for the top! Staying positive and noticing the changes keeps my hopes up. Not going to give up. Made it through the initial side effects not to downplay it now. It is made very clear it takes 4 - 6 weeks to get in your system, so I just have to remember to stay positive and most of all be patient.

Let's see, when I first started my balance was off worse than usual, but I attributed it to the Ampyra trying to retrain my legs to walk "normal" and not so much side to side. Now it's getting better although when I walk and I have to change direction to go back, I have to take little steps and turn slowly.

I was shocked that my neighbor saw me go out to the driveway to get the mail and commented that "you're speedy all of a sudden, if it wasn't for the cane I wouldn't of thought it was you!" I do walk faster through the house, haven't done a lot of walking outside though, but have plans to try and go out this weekend and see if I can last in a store longer than 15 minutes before my legs give up and lock up or go all "wonky."

Cool thing happened the other day though. I went to the store for a quick minute and when I got back home, I shut the car off and got out and started walking towards the steps. After a few steps I realized... I had left the cane in the car! I just had got home and got out of the car and started walking in as if it was the most natural thing in the world. I went back and got the cane and used it though. But WOW it was a neat feeling and it makes me feel I am on the right track!

I miss walking normal, but am glad to be able to walk at all even if it's for a short period of time. (very short) BUT I can tell something is happening inside my body. My brain is remembering how to walk correctly, and hopefully the signals will strengthen and bridge the gaps in the nerve connections to my legs. I can tell when it's near time to take the evening dose as my legs get heavy and stiff.

Something is definitely happening. I'll keep you posted over the next few weeks and see how it's going. I have a doctor's appt at the end of the month and I hope to walk a little without the cane and show them how I'm feeling. Mostly I'm looking forward to even if it's not a normal gait, I can walk longer than 10 - 15 minutes before my legs give out.

Hard to believe that 6 months or so ago I was in a wheelchair when I started the Gilenya. I was in the middle of a "flair" up, once it stabled itself, I haven't had one since! Go Gilenya I hope it keeps up and this is the medicine that keeps the flairs away. It has been so far, so there's no reason to believe otherwise. I'm hoping to beat my old score of 4 years without a flair when I was on Rebif before they changed me up and put me on Copaxone, I had a lot of flairs constantly that turned into a bad one that lasted 7 months. Everything came back though except my walking.

They put me back on Rebif, but after being off of it for 7 months my body had built up a type of immunity to it. Now it's Gilenya and so far so good. My MS is more stable and so now my neuro wants to give the Ampyra a shot. I was nervous at first, but am so glad I did it and hope to see good results.

Hope you're having luck with it and that I will too. I definitely think there's good things beyond the horizon up ahead!

Take care and thanks for listening.

~Jenna

[JennacydeL]

One week down, 3 to go...

Well, a week and a day and a half since I started Ampyra! I take 1 pill, twice a day, 12 hours apart. 7:30 is the lucky number for me.

I started last week Tuesday night. Went through Wednesday no problem, then Thursday was terrible. I was bad nauseous in the morning, then I had a bad case of "D" when the side effect mentioned when you take it is "C" (Bathroom issues if that helps you understand) I talked to my neuro's nurse and she said it sounded more like a 24 bug than anything.

The next day I woke up with a headache which can be a side effect. It was mild so I didn't medicate for it, just worked through it the best I could and haven't had any issues since.

I'm so excited, hope in 3 more weeks it will start working well, it says about 4-6 weeks to get in your system well to see if it helps your walking and balance any.

I do notice my legs acting funny some though. They seem heavy and I walk a little, I don't know, "off". It's not in a bad way though, it's almost like my legs are trying to get used to walking in a different way than I have been.

I use a cane outside of the house. I notice the way I was walking before I got this feeling was more side to side, and now it seems my legs are trying to walk closer together, if that makes any sense. It's almost as if my legs are trying to remember the way I used to walk normally before I had issues. I'm at least staying positive and look at it as if they are trying to get back to where they were before the problem.

Anyway, it was hard to find posts about Ampyra as there was never really a place where it fit since it's not a DMD although it is a SXT that A LOT of MS patients are on.

It's hard because I am constantly trying to see if I notice anything and hoping I fall into the 33% it works well for, I'll even be happy to be in the 33% it works a little for too!

I look forward and hope that some of you will come and post here now that there's a place and share your experiences, questions, and concerns

See ya around!

Jenna

[Seasha]

This new thread is to help you with information about Ampyra (dalfampridine), the oral drug designed to improve walking for people living with MS. Feel free to post your experiences or questions here!

http://ampyra.com/
The official website

https://www.accessdata.fda.gov/drugs...s003s004mg.pdf
The medication guide from the FDA

Other helpful sites:
http://www.nationalmssociety.org/Tre...cations/Ampyra

http://www.acorda.com/products/products/ampyra