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Thread: Anyone taking Ampyra now?

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    Distinguished Community Member agate's Avatar
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    Default Anyone taking Ampyra now?

    I saw the new neuro, and she's keen on Ampyra as a possible way to improve walking. I recalled some discussion of it here and did a search. I came up with quite a few threads, including this one:

    http://www.braintalkcommunities.org/...for-me-anyway)

    Just wondering if those who were on Ampyra a while back are still on it or if anyone else is on it or considering it.

    I'd like to know how much it helps and what side effects you've had, if any.

    Linda (Lazarus), I think you still take this drug? And I found a thread where DAR said she couldn't tolerate the side effects.
    Last edited by agate; 10-09-2017 at 01:19 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Joan, is that the one that you must take at the same time(s) or it stops working?

    ANN
    There comes a time when silence is betrayal.- MLK

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    I saw the new neuro, and she's keen on Ampyra as a possible way to improve walking. I recalled some discussion of it here and did a search. I came up with quite a few threads, including this one:

    http://www.braintalkcommunities.org/...for-me-anyway)

    Just wondering if those who were on Ampyra a while back are still on it or if anyone else is on it or considering it.

    I'd like to know how much it helps and what side effects you've had, if any.

    Linda (Lazarus), I think you still take this drug? And I found a thread where DAR said she couldn't tolerate the side effects.

    Hi Agate,
    I am still taking ampyra. It seems to help a lot. I have not had any side effects and do not know what they would be. People used to take 4-AP and that was also fairly free of side effects.

    When it begins to wear off I can feel it in my legs. If I miss a dose I can feel that too.

    So, it has been helpful for me to keep walking when I am doing well. It will not fix walking problems when I am in a flare but it helps a lot in day to day stability.
    Hope that helps
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member agate's Avatar
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    Maybe? It sounds as if the dosing times have to be very precise:

    https://www.drugs.com/ampyra.html
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member BBS1951's Avatar
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    Sounds worth a shot. Your pedometer will go nuts!

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    Distinguished Community Member BBS1951's Avatar
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    What did you think of your new Neuro?

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    Maybe? It sounds as if the dosing times have to be very precise:

    https://www.drugs.com/ampyra.html
    Well, I have been taking ampyra for many years now. I aim for 12 hour dosing as prescribed but have gone an hour or two either way and then I just move the times back to my normal 12 hour schedule. When I take it in the morning I turn the bottle upside down and then set it back upright when I take the evening dose. Keeps me from any confusion about whether I took it or not.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member agate's Avatar
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    The new neuro seemed nice though I waited far beyond my scheduled appointment time--about 45 minutes--and she was doing the exam in a rush.

    Still, since I made it clear that I was just there for a checkup, with no urgent concerns, I'm not surprised that she raced through the exam in order to catch up on her schedule.

    She was pushing liquid vitamin supplements instead of the Centrum Silver caplets I've been taking for years. She says she thinks the liquid version is more effective.

    I asked if the liquid version would have the same ingredients as Centrum Silver. She said it might have slightly different ones but I could find this item at any vitamin store.

    I didn't tell her that I don't go to stores any more. I'm assuming that if I decide to try a liquid vitamin, there are online vitamin stores.

    She'd like to do another MRI. She says she usually gets a neck and thoracic MRI in addition to the brain MRI with MS. I have never heard of this though I've heard of a spinal MRI. Maybe the neck and thoracic MRI IS the spinal MRI? It's at least part of the spine.

    This issue was left dangling. She wants me back there in 6 months.

    I was hoping for a year but that's OK. She's showing enough of an interest in me to want me back there that soon--I'm flattered.

    She's at the same clinic where my previous neuro was. I was much more favorably impressed by the place this time. I hadn't been there in 2 years.

    This time they were nicer, and when I need to get to the washroom, I was shown to a washroom right inside the office area--beautifully clean and quite accessible!

    Other times when I've been there the only washroom I knew of--the one they directed me to--was outside the office and a long way down the hall.

    So high marks for the clinic and the neuro!

    Also, hurried though she was, she was willing to answer a question I've had for a long time. A few years ago the neuro found positive Babinski signs on both sides, but last year the neuro I went to didn't find them on either side. My question for this neuro was: If you have a positive Babinski sign, won't it always be there, or does it come and go?

    She said that it's difficult test to interpret because the patient might not be relaxed or might automatically jerk a foot, making it almost impossible to tell how the toes are behaving.

    She said that today mine were "mute," meaning that she couldn't determine them. Every time she tried, my foot gave a wild jerk.

    When you can ask a doctor a question just because you'd like to know the answer and it has very little to do with your actual treatment, I'd say you're probably getting along OK with that doctor.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    I've never heard of a neck and thoracic MRi for MS either, Joan. At Partners MS Clinic (associated w the Brigham and MGH) they include the spine every other time. No neck. Cervical spine, yes.

    ANN
    There comes a time when silence is betrayal.- MLK

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    Agate, that sounds kind of like a winner to me. My Neuro did brain, spine and thoracic area on me. He stopped with the thoracic MRI after doing just two or three.

    I still have not gotten an appointment with the Neuro who replaced my old one. First they told me the books were not set up, then they said they would call me. I am going to call one day this week.

    I am glad you had a good experience this time. To keep her happy try to do as she says as far as going back in six months.
    Virginia

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