Ampyra And Balance

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My neuro is putting me on ampyra, and I am excited about this. My biggest MS problem is lack of balance. Anyone seen a difference with balance issues on ampyra or its compouding equivalent?

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Ampyra contains the active ingredient Dalfampridine, it has been proven effective at managing some MS symptoms.

This is a very new medication, but we have a few posts on it from people who have been using it, perhaps someone there has posted more information, most have said they've gotten good results from it.

http:/­/­www.prescriptiondrug-info.com/­threads/­AMPYRA-D77105.htm

http:/­/­www.prescriptiondrug-info.com/­threads/­AMPYRA-D77105.htm

Does anyone else have experience using this?

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Hi Callie. I have been on ampyra for about a week and a half. I still cant decide if i see a difference yet. I did notice that my bladder issues have been a little better and i seem 2 be a little steadier. Balance is my main issue too,so i am trying to really concentrate on not walking with my cane to see if i see a difference in my gait. Right now tho the improvement is minimal. Everyone is different so i am going to give this drug probably 3-6 months and if i see a significant improvement i will keep taking it, but if not i probably will stop. Good luck and let me know how u do on it. I am glad i found someone else just starting nthis. Lynn

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My neuro said it can take 4-6 weeks to see any sign of changes. I don't even have the meds yet, but will let you know the results when I finally get started on them.

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Hi Callie,
ooh, im so glad u said that. Atleast now i know that it does take a while. Please keep in touch and let us all know how u do and i will do the same. I dont really know anyone that is taking it.
Lynn

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Hi Callie, I am new to the forum and have been on Ampyra for 1 week. Since every day was different before, it is hard to say if it is better. I think that so far there is some improvement in strength, and a little in balance. It is a pain to get this stuff. It took 4 weeks from when my Neuro faxed the prescription and I called them every other day to bug them. There are only a few pharmacies that handle it and Acorda has to approve the insurance before it sends it through to the specialty pharmacy. They then go through the insurance process again before processing the order. I really feel it is going to be worth it. I went to a charity dinner last night and was able to dance a little without my cane as long as it was a dance where i could hold on a little. I hope it does well for you.
John

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Got a call last week that Ampyra has been approved by my insurance but have to wait another week for the insurance co. to call and set up delivery. Thanks for the updates. Will weigh in if ever get the stuff!

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7

I have been on Ampyra for 3 weeks now and a few days ago I did something I have not done in 10 years. I felt really good one night and decided to try to run. It didn't look great but I actually ran about 15 yards in some low cut grass. I did that 4 times while my wife stood there and cried. Like I said it was a little clumsy looking but it felt wonderful. As you all know, every day is a little different and I haven't felt confident in my balance to try it again but I am sure I will soon. I hope and pray you will all be able to get on Ampyra soon and it will help you to do the same. Try it and stick it out for at least a couple of months. Hopefully it will help.

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Hi!

i AM AN MS PATIENT FROM POLAND (UE). I CAN'T BUY AMPYRA FROM THE US BUT I'LL BE INTERESTED TO COOPERATE WITH AN AMERICAN TO BUY IT FOR ME, I MAY FINANCE SOME FOR HIM... my email: [email protected]

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Hi!

i AM AN MS PATIENT FROM POLAND (UE). I CAN'T BUY AMPYRA FROM THE US BUT I'LL BE INTERESTED TO COOPERATE WITH AN AMERICAN TO BUY IT FOR ME, I MAY FINANCE SOME FOR HIM... my email: [email protected]

anyway I need and want to buy ampyra. please help me.

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10

I've now been on Ampyra for 20 days and as yet see no sign of any changes. but I will stick with it and keep my fingers crossed. How's everyone else doing?

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11

I am both a British and American
citizen, and yes, I am a long term sufferer of ms. My neuro in the US recommended Amprya to me, but as I have no insurance, I had to wait about 6 weeks to get approval for the drug, directly from the company itself. I have received the approval that I hoped for, thank you, but still have to fill out forms etc. before I can start.
meanwhilst over here in the UK, on holiday to see my family, I discover that the drug is not even liscensed!
Why not? I know my friend took it in Canada and they have a national health system.

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Hello everyone. Does anyone know how I can get Ampyra from outside US?

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13

As a uk resident it is incredibly frustrating to read of drugs and treatments that are made available elsewhere in the world and not to us. Can someone tell me how to obtain Ampyra in the UK?

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Hi, my name is cedelle and i live in the UK, are getting this medication in the UK or are you abroad?

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Hi cedelle, I live in the Uk and my GP tells me that Ampyra is not approved and he cannot prescribe it. I do not understand how you have been able to be prescribed. can you explain?

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Hi Phil, Sorry i was asking are people getting this abroad or in the UK not that i am actually!getting it

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You don't have to take it very long. If you don't see a difference within a week it isn't working. I don't see where any of the drugs do anything significant except get drug companies rich!!!

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18

I wonder if anyone can help me with some advice.My friend has ms for many years now and walks with sticks,we have heard of this drug ampyra,what is the best way of getting this drug prescribed in the UK.I have read many of various posts on this site and it seems its worth a try...Regards Andy

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19

i live in teh US an have MS. I was started on the med last year. i will be honest that not always good abotu taking med 2x/day like written. at first i was nto sure if I noticed a difference. then I tried on seperate occasions to not take the medication on purpose adn noticed a decline in mobility and increase in limp. It's hard to tell, but I think you definitely need to take for a few months before givign up on it and then maybe trial a period off of the med to see if a decline happens.

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20

HOWDY YALL, CHEK IT OUT I, SUFFERD A DIFFUSED AXONAL BRAIN INJURY 22.25 YEARZ AGO & AM SO GREATFUL TO BE ABLE TO WALK INDIPENDENTLY WIT WALKER. MY BALANCE & COORDINATION IZ ASCUED & PROBILY ALWAYS ? BUT ASPIRING " AMPYRA " CAN ASSIST IN ENABELING ME TO AMBULATE MORE FLUIDLY & WITH MORE STABILITY ? I, ASPIRE

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Started Ampyra once a day for 2 wks. Wow. My balance, overall strength and stamina have been remarkably better. After about 12hrs back to all my MS symptoms

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