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    #1

    Ampyra

    I'm interested in other MSer's experience with this new med. I have been on this since June of 2010 and have had amazing results. Before that, I was just "existing" getting up in the morning and wanting to go back to bed by 10 a.m. I didn't walk much and did even less activity.
    Since I've been on Ampyra, I actually go for a walk down the street and am back to baking bread and sweet rolls.
    I have no side effects. I have said so many times that God worked all of this out because after I was able to switch from the useless neuro I had been seeing to one who specialized in MS, she sent in the paperwork and said it would be 2-3 months til I could start the med. That was April 29th; they called on June 1st from this pharmacy and I started on June 3rd. I noticed about a month later that I woke up about 6 and could go most of the day without getting tired.
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    #2
    I have also had excellent results and decreased fatique level, I have been on it and Tysabri for 19 months now and between the 2, I am feeling much better.

    As I have said before for people who try Ampyra and don't think it is working for them do not take a dose or 2 on purpose, it will let you know very quickly if it is helping you. If I miss a dose it takes me 2 doses to get back to normal, seems the longer I'm on it the more it effects me when I miss a dose.

    I noticed a difference and those around me noticed it also within 48 hrs of my first dose. But it is like all other MS meds as it helps some but not all.

    My dr's practice had never prescribed it to anyone so I was the first and it took a while to figure out all the paperwork for it. Although I am no longer treated by him, he still calls and asks how I am doing etc, he was just out of med school when I first saw him but he trained under a MS specialist. I was only the second person he dx with ms so he is trying to keep track on me.
    Plan for the future, but not too hard; it’s not your decision anyway

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      #3
      scooter24 when you started how fast would you say it started to work. i took it for 5 months and nothing

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        #4
        I noticed a difference and those around me noticed it also within 48 hrs of my first dose. It is like other MS meds as it helps some but not all.
        Plan for the future, but not too hard; it’s not your decision anyway

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          #5
          past tx w/ ampyra

          May try it again...stopped to try other meds. Past experience is did not help too much w/ walking but did help my mood - felt like myself again, motivation improved, in general felt better.

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            #6
            I'm like DebRA, but I tried it for 12 months and it did not help my walking improve. I thought it might have helped my energy level somewhat. But I just went off it a few weeks ago and still no difference. My increased energy level is the same - that may be contributed to my supplements. Walking hasn't changed a bit. I guess I'm of that percentage of the unlucky ones. I'm glad it's working for you and others!!!
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

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              #7
              Had Ampyra rep and dr at support group tonight, rep said they have a program where they will give you 2 months of Ampyra at no cost, this would give people a chance to try it and see if they benefit from it without laying out any $ first, they said you just need to call the co after dr has approved and completed paperwork for it.
              Plan for the future, but not too hard; it’s not your decision anyway

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                #8
                Scooter, wow, much thanks for the most recent post. Again my mom is a trailblazer (with her doc). After reading your post, I faxed Mom's neuro overnight (it has been my experience that Mom's docs and their staff are more pro-active to a fax than a call plus in my faxes I do everything but get in the car and dial the numbers for them) and spoke with Ampyra this afternoon. Ampyra instructed the neuro's office manager this a couple of hours ago to get in contact with their sales rep for the First Step Order form. (I HATE bureaucracy; what was the big deal for Ampyra to fax it then!!!)

                Mom signed quite a few forms last week in the neuro's office; would have been nice if one was for the two month free trial period. It appears Mom's his first patient aware of this deal...considering it's a specialty drug and mom's co-pay would be 100.00. Every little bit helps. I was told by Amprya that the free supply would come directly from them and if it works for her then the third month's supply would come from the specialty pharmacy.

                I've read on other threads how all these neuros scattered throughout the country recommend these meds (with the best of intentions), perhaps also give out some false hope and then the hammer comes down and the co-pay is like a week's worth of groceries. A specialty drug is a specialty drug and they always seem to come with a crazy high premium. Would be refreshing for these neuros to ask their sales rep The Next Question.

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                  #9
                  He was also describing how ampyra works and why it helps many with heat tolerance. Ampyra helps stop the body from putting out potassium which causes the "short circuits" in our nerves, he said the body also puts out more potassium when our body temp rises, as ampyra is resticting the out put of potassium some of us are helped when we are in hot conditions. This makes sense as I am able to tolerate the heat much better than I was before I started it. just one of those nice to know type things.
                  Plan for the future, but not too hard; it’s not your decision anyway

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                    #10
                    The 2 months free is a very good thing. However, you don't qualify if you are on 'Government Insurance' such as Medicare/Medicaid.

                    It has been exceptionally good for me. Much easier walking, stability and fatigue. It is Expensive, about $14000 per year, so the Insurance Whines about it, but they do pay.
                    Bill
                    Scuba, true meaning of Life! USS Wilkes Barre 91, USS Monitor 96, 97, 99 .. Andrea Doria 96, 98 .. San Francisco Maru 09

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                      #11
                      amprya and heat

                      I was pleased to read what was said about how Ampyra helps with heat. I didn't notice much last summer in the extreme heat but hopefully this summer will be different. What have some of you others who are on the drug noticed?

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                        #12
                        The 2 months free is a very good thing. However, you don't qualify if you are on 'Government Insurance' such as Medicare/Medicaid.
                        One of us is reading it incorrectly, if you are going by the writing at top of the page I read to say "if you have part D or other government govt coverage" so to me it sounds as though as long as you don't have part d or other coverage for your drugs you are eligable,

                        If I get a chance tomorrow I will call them and clarify.
                        Plan for the future, but not too hard; it’s not your decision anyway

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