I have been on Ampyra for almost 2 months now, and have noticed that when it wears off, I am very aware, my legs become weak, I become clumsy, and my coordination is not good.. and when it wears off, my body is definitely worse feeling then it was when I began ampyra. Yesterday am I took a pill and havent since and am very uncomfortable with how my body feels right now.. It is tight and weak and slightly spastic in my legs.. very disturbing to think this may not wear off.. I am not sure what to do. Do I stay off for a bit and see how my body responds? Is it simply going through a 'withdrawl' of sorts?
Anyway, thought I would share this..

I haven't heard any really possitive reports about the efficacy of this drug. so far.

Anyone else?

Welcome to NeuroTalk, Claire.

Quick reply - Im doing good so far. Strength is there but I use Testosterone inj. slightly high dose 100mg every 7 days. No sensory help from Ampyra at all. will be getting doppler n MRV in couple weeks. Praying I have narrowed vein or art (ccsvi).

I have been taking AMPYRE for 2 weeks. Tried all the other DMD for multiple sclerosis, all with troubling adverse reactions. This being a neuron potassium channel blocker, that is now FDA approved. After using other meds, not approved with NO positive effects. I wanted this one. I BELIEVE that nothing good comes surpressing the immune system.

I still have MS, I still catheterize 6-8 times a day. When I forget I will be incontinent. I still use a wheelchair, it is just alot faster getting to one place. I am exercising to strenthen the legs&the core muscles.

Had this disease since, 1979. It is going to take some time to get ambulating how I use to,which time and patience I WILL obtain my goal.

Good wishes for you (((((Vane)))))

Let us know how this treatment helps and works for you.

Cleared up my head. I can put together my thoughts and speak them so I can be understood. Tolerate the summer tempertures, keep the ac set @73degrees and still be able to physically function. Take a shower indepentently, with my shower bench. Able to walk short distances with walker. Less spasms, I only need baclofen 10mg 3x's a day. I do not fall out of my chair because of them, that happened frequentley before Ampyra. I feel like I have a purpose being alive.

I highly recommend this medication. I take one 10mg tab every 12hrs. I will give Fampridine-SR after FDAapproval. Once a day is better than twice a day. No negetive side effects for me.

Love to hear other experiences with it.


Sincerely,

Vanessa Rorison

As far as spasms go for me, Ampyra sure didn't reduce them. They're still terrible. Forgot to take my morning Baclofen 40mg (120 per day) and holy bleep. I took them throughout the day and were still bad even when I went to bed.

Sensory is still going downhill.

Strength is there but I have to hand it to testosterone (80-100mg week) & daily exercises including swimming.

I can't recommend Ampyra as of now over cheap testosterone. Everyone's MS is different though so try it..maybe?
If something improves strength by jumpering nerves, why doesn't it improve sensory??? I don't understand this one.

I was taking Ampyra twice a day for about six weeks. I missed one dose and was amazed at how stiff, leg spasms and difficulty with fine muscle movements for balance, became. (Worse than before taking). Then I got on my schedule again. I now changed insurances and must wait for their pre-approval and have one pill left. This is how dependence on drugs occurs so
I will be paying attention to see if things get much worse and if that lasts.

Thanks and let us know. I assumed it only helped strength since my sensory is going downhill no matter what I try. I'll switch to twice a day if it helps spasms. 120mg baclofen/day and they're still terrible. Sudden jolts added to the mix lately.

Hi I fell asleep before I took my Ampyra last night. I awoke about 2 and felt
OK but when I awoke this morning, the rebound after not taking it was awful
My lower back hurt it was so tight and I couldn't walk and fell. It took me
20 mins. to loosen up enough to get up. I think the company needs to address
this and tell us if we would eventually return to the "before Ampyra" level.
As it was, I grabbed my pill!