I started the Ampyra Friday night at 7pm. [July 23, 2010] I have heard it can give you a burst of energy, but for me not so much. On Friday I was tired, but tried staying up late. Why, I do not know. Maybe I was waiting to jump up and walk! lol By the time I went to bed, I had 4 hours of sleep. My cell alarm went off at 7am, got up, took the pill, and went back to sleep until 2 pm. Last night [Saturday] took it at 7pm, went to bed around 10:30pm, got up at 7 am, back to sleep until noon. The only real issue I feel is being more dizzy than normal. Shaddup! 😛
Most of the ‘basic’ side effects of Ampyra I already deal with thanks to the PPMS. So, it’s hard to distinguish between a side effect and my MS. Some people have stated they feel tingles in their legs. I feel things like that anyway, so it might not be all that noticeable to me. It will be different for everyone just like MS is, so I figure when something happens for me, I’ll know. 😉
I would love to hear from others with Primary Progressive MS that are trying the Ampyra. There are not that many studies for those with the chronic progressive form of the disease. Most medications are for RRMS [Relapsing-Remitting] so I’m sure the medication and it’s results will be different for people who are progressive.
So, not much new to tell you. I’ll be back!
Blessings and Hope!
Making it Through the Rain 
Is it the kind of med that has to build up in your system, or supposed to work right away?
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hmmmm, not sure. Some say they notice a difference right away. So far, nada for me.
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I’ll ask my sister as she knows another woman who has MS and Bob works with a woman who has MS, so I will ask him too!
xoxo
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cool beans! 🙂
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I have PPMS and am almost finished with month 2. I have not noticed any benefits and now my arms are tingling, which I did not have before. Not sure if it is the Ampyra or just coincidence. I am going to give it 3 months and if I do not see a benefit by then, I will quit it.
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My arms actually started hurting last night. My back as well. Like you, not sure if it is the Ampyra or the MS. Wish this had been out when I was still rrms. But, who knows. lol I’ll keep on it for a while longer as well, and hope I see some improvement. Please keep me posted on your progress.
Thanks for dropping by!
Tracy 😀
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My husband has RRMS and his doctor is recommending this drug. He has great difficulty with the entire left side of his body. His balance is not good, and he cannot control his left hand very well. Is this drug usually recommended for RRMS?
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They say it’s for all types of MS. But, I’m sure it will help RRMS’ers better than those of us progressive. 😀
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