No more spaghetti or jelly legs!

[Mark1499]

I recently posted a question just prior to my neurology visit about my gate being off and got some really good answers however after visiting my neurologist I was put on a medication called ampyra. You have to get it from a specialty pharmacy and my copay is 47$ a month but it is ms specific. It takes about 2 to three weeks but I am now walking normal. After feeling so defeated I’m completely blown away! If you have this issue please consult your neurologist. I’ve yet to research the drug yet I just know IT WORKS FOR ME!

[Frances_B]

I'm glad it works for you (it did nothing for me) - it only works for about 30 or 40% of people who take it so you got one of the lucky tickets in the Ampyra/Fampridine lottery. If it is going to work for someone they will know within about 4 weeks of starting it - so for anybody who thinks of trying it, there is no point in continuing to take it if it doesn't work within a month (or 6 weeks absolute max).

If you are going to continue taking it make sure you stick VERY strictly to the 12 hours apart dosing schedule otherwise your risk of having a seizure (a rare but known side effect) will be increased (especially if you try to reduce costs by getting a compounded version made up which is not slow release).

[mrsmike]

Glad it's working for you. I've been on Ampyra for 9 years and has been a big help .

[starlight5]

I used it for several months and thought it helped some (placebo effect 🤷‍♀️ ) but when I discontinued for a while and then started again, I realized it was not of enough benefit to keep taking.

I am very glad that it is working so well for you! 🎉🎉every little bit helps

[Mark1499]

Thanks

[goatgal]

As Frances B says, you are one of the lucky ones. I was not though I wish it were otherwise. In my case, a decade back, the first dose caused immediate vertigo which was reported as an adverse effect. My neuro told me not to take another.

[Mark1499 in reply to goatgal]

That’s terrible! I’ve had other replies where it just didn’t work at all. My neurologist told me stem cells didn’t work for everyone either. Guess I drew the right straw on this one.

[goatgal in reply to Mark1499]

I'm glad it worked for you. I often have unanticipated side effects to drugs that work for others. And at the same time, I have no reaction at all to some that lay others low. That's just the way the world works. Each of us is a bit different from every other individual...and isn't that a wonderful thing!

Because I tried it early on, I had a two month free trial. Though a MS group, I was able to give my stash to someone whose insurance had a high copay, so it was actually a win for her. I considered it a win-win.

[Mark1499 in reply to goatgal]

God bless you for your that. I really can’t afford the 47$ copay so it’s a financial trade off but just being able to walk normal again is a boost in my mental health. My neurologist says stem cells doesn’t work for everyone either!

[CatsandCars]

I've seen others comment that Ampyra is cheaper through Mark Cuban's Cost Plus Pharmacy.

It's so wonderful that it's helping you.

[StacyHayward]

it works miracles for me too! I actually take it twice a day. Once at 7:30 am and again at 3:00 pm. My walking improved significantly. I started brand name and movies to generic with no problems.

[starlight5 in reply to StacyHayward]

After I had been on it for 6 months or so my neuro was fine with me taking it about 8 hours apart also, rather then the recommended 12hrs, and I never had a problem. It was just unfortunate that I wasn't one who it worked for. Glad it has improved your walking🎉

[sashaming1]

Congratulations.

[lbenmaor]

Great News Mark! I'm glad it helps.

Leslie

[Mark1499 in reply to lbenmaor]

Thank you. Based on some previous replies I must have drawn the short straw on this one. Some have even been sarcastic but that’s okay I understand frustration when medication doesn’t work.

[Frances_B in reply to Mark1499]

You've said that Ampyra is working for you and your walking has significantly improved so why are you saying you drew the short straw? That would only be the case if you had seizures with every tablet you took or if other side effects were so drastic you had to stop taking it. Or are you just getting your idioms all mixed up?

idioms.thefreedictionary.co...

Also - where did you get "sarcastic" replies given to you? There aren't any on this thread...

[Mark1499 in reply to Frances_B]

I’m saying I got lucky in that I AM able to benefit from a medication that others not. Also a congratulations with a period and not an ! Is sarcastic. I don’t understand why you’re the only one splitting hairs or making assumptions about what I mean. I don’t post on this to be scrutinized by the POST POLICE! I hope in the future you will be as supportive like most people and less critical!

[Frances_B in reply to Mark1499]

There wasn't any splitting hairs going on - I just found it very confusing when your original post was singing the praises of the drug Ampyra and what it had done for you, but then you used an expression which meant that you had experienced a bad outcome with it.

As for interpreting full stops vs exclamation marks at the end of a word - everyone uses them slightly differently, so to interpret what someone else wrote as sarcastic is "making assumptions" about they meant and really no different to you telling me that I was making assumptions about your use of the "short straw" expression (and it wasn't me that wrote the word "Congratulations." with a full stop instead of "Congratulations!" with an exclamation mark which appears to have upset you).

[Mark1499 in reply to Frances_B]

I’m just curious but do you scrutinize every post As far as the short straw many would consider it the winner. You’re the only one who even brought it up so I think most people understood. As for the punctuation that’s my opinion which we are all entitled to. I can only say that I will pray for you as I do all MS patients Please do not respond to anymore of my posts and I will not respond to yours. Have a great day!

[lbenmaor]

Mark,

You did nothing wrong!

Leslie

[Mark1499 in reply to lbenmaor]

Thanks

[ByeByeMS]

Mark1499, I am happy to hear that Ampyra is working for you!!!! I have been on Ampyra since 2010. It has proven to be a Godsend for me!!! After taking it daily for about 2 months, my walking was and has been greatly improved because of it. (For me, it took about 2 months before it finally kicked in!) Ampyra works for me. I encourage all with gait/balance and/or walking concerns to please talk with your doctor to determine if Ampyra is an option for you. Good luck everyone!!

[greaterexp]

Hurrah!! I’m so happy for you!

[Tazmanian]

How much do you take?

[Mark1499 in reply to Tazmanian]

10 mg every 12 hours it took about a month before I noticed it the drastic change! I understand it doesn’t work for everyone guess I’m just lucky

[Tazmanian in reply to Mark1499]

That's what I take also

[lbenmaor]

You're Welcome.

[Fancy59 CommunityAmbassador]

Congratulations Mark! I tried it several years ago without success. I am very glad work for you however. Fancy59.

[Lhallgrigsby]

Been on Ampyra for about 10 years I love it. You know there is a generic out now. The generic is only $45 dollars and does no come from the speciality pharmacy,

[Mark1499 in reply to Lhallgrigsby]

Can you give me the generic name? My co pay is 47 though United Healthcare so maybe the generic is a lot cheaper! Thank you so much!

[CatsandCars]

Dalfampridine.

[Mark1499 in reply to CatsandCars]

Thanks