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Ampyra

Has anyone tried Amprya for walking? My neuro suggested I try it but I've not done so yet because the side affects seem so terrible.

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judymax

I would take it if I could but I have a history of febrile seizures as an infant and so I'm not a candidate for Ampyra.

I'm convinced that in addition to walking it can improve cognition via improving nerve transmission.

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I tried it about 5 years ago for about eight months. No side effects, but no improvement either. So I quit, but I think it’s worth trying.👍

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I have been on it for about 7 years st first I did see some differents in my walk sometimes I think I should get off of it to see if it is doing anything. The only reaction I had was in the first two weeks I had a slight rash on my face, which they did say would happen. It lasted about three days. I did have a twitch under an eye but it only lasted about three days. That’s all I can help you with.

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judymax, Let me begin by saying I do not tolerate many of the MS drugs - I tend to feel and walk like I'm drunk! I tried Ampyra for a few months and saw no difference in walking and just got tired of the drunk feeling so I stopped taking it. What do you have to lose? The manufacturer will probably set you up with free Ampyra.

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Hey Judymax, I took Ampyra for years. My cost was $40/month, and because my medical expenses have been going up considerably over the past 4 or 5 years, I talked to my neuro. I wasn’t sure if it was helping or not, and he said it was okay to stop taking it. He also said if I noticed a negative change as a result, I could go back on it. I really didn’t notice any difference. The main thing to remember is that you take Ampyra twice a day, and never double up if you forget a dose. The people at your insurance company will remind you of this at every refill when they call you. I hope it helps you!

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I had to quit it. Didn't work and I had a reaction to it. Some people it works great for them.

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I had a horrendous itch for about a week and pain in my back and torso. Also indigestion. The first 2 stopped after about a week and I find that if I take the Ampyra with food I don't seem to have side effects. I've been taking it about 2 months and have seen no improvement yet. Maybe in another month or two.

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I have been on it for about two or three years, can’t remember for sure. Initially, it made a huge positive difference for me and I only took one pill a day in the morning. I just did not want to take two a day and never did. It really helped me a lot up until 10 months or so ago. My disease just took off like a rocket and no pill was going to help me walk anymore! But I am grateful it worked for me and I never had even one side effect, I loved it. I also had a $40 co-pay. Let us know what you decide. Love, Kelly xx

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Took it..no real side effects but no change either...then after 2 yrs had UTI twice so quit

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I've taken it for 7 years with no side effects. I find that it helps both my cognition as well as my energy level. A couple of weeks ago, I forgot to take the morning pill and by the end of the day, I was struggling to even transfer to my recliner.

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Judymax Ampyra was the first med suggested to me, so I tried it. One dose and within 30 min vertigo made it impossible for me to move for another half hour or so. Remnants of the vertigo clung for a day and a half making me fearful of moving from room to room, going about my routines. I never took a second dose. It was reported as an adverse effect. At the time, I was 76.

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goatgal in your post you mentioned that when you tried Ampyra you were 76! It is so funny, I have always pictured you as being in your 30s or 40s! Isn’t it funny how we form mental images of people we have never met, but feel like we know. Love, Kelly xx

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Amore55 Dear Brave Kelly, Thank you for telling me that I sound young...the odometer constantly startles me, every time another year is added because I am still as mystified by the great big world as I have always been...but I cannot tell a lie, I am now another year older than when I thought it might be good to walk a little faster.

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goatgal I love how you said that, that you are still as mystified by the great big world as ever. It is truly amazing and I love to learn about everything. And your statement “I am now another year older than when I thought it might be good to walk a little faster” sounds like something my favorite poet Robert Frost would have said! How I wish we lived nearby and I could visit you. You are just amazing. Thank you for cheering my day so greatly. 😇 Take good care of yourself and if you do not mind I will write to you soon again. Love, Kelly xx

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Amore55 Hi Kelly, My email is oldwomanfarm@gmail...and though I don't have great email/internet access at the moment, I still prefer writing to speaking. Long story but not really interesting to everyone. I admire your courage and call you exemplary. LInda

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goatgal my email is miracolo1@icloud.com

That way you will recognize me when I write. So happy to be able to get to know you, I have always admired you. Have a good evening. Love, Kelly xx

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I have been taking ampyra for almost three years and have had no side effects or reactions from it. I make sure I take it once every 12 hours as per drs rx. It helps me. Good luck.

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I have taken Ampyra for several years now and have had no side effects. It did help improve my walking and I’ve never stopped taking it so I don’t know if I would notice a difference now without it.

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Hello, ive been on AMPYRA for 3 years really helps me especially with fatigue good luck with what you do!

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@judymax

I currently take it an I have had no side affects. My walking has improved.

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Been on it for 2 years I stopped taking it and it was harder to move

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Hi, I have some idea about how to improve the efficient of Ampyra medication in the body, I spoke to my Neurologist when he was explaining the medication in a Lecture, and he likes the idea very much: its all physiology: Ampyra works with Potassium channels,but nobody talks about electrolites, nutrition balance. In America we eat too much food with excessive Calcium intake, that is the opposite effect of K. Wh is taking Ampyra shoud reduce calcium, reduce too much cheese and extra supplements with calcium to help better finction of Potassium. And also take Magnésium to balance both minerals

We have deficence in Mg from food and magnesium prevent spasm and reduce pain and help potassium working better. Its all about physiology. Who takes Ampyra shoud reduce Calcium, take Magnesium Malate or chelato, at least 200mg to 400mg a day divide, and reduce Calcium from food. Then the medication will ve more effective, with the correction of electrolites in the body.

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Thanks I was going to stop the AMPYRA but with you saying what to take maybe I won’t.

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My MS Neurologist love the way I explained at the meeting about the potassium and calcium channels. They will work better if you add magnesium as I mention that is the number one electrolites, mineral deficient in America.

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I’ve taken compounded 4-AP for almost a decade. When Ampyra emerged (basically a time released 4-AP) i switched over for 6 weeks. My physical therapist was doing 6 minute timed walks for comparison.

I actually performed and felt better on the compounded 4-AP so I switched back and still take it daily.

If I mismanage my refills and run out for a day or two, I can really feel the difference it makes.

I’ve never had any side effects.

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Began taking Ampyra in 2011, when dx'd with MS. I felt a difference within 30 minutes, walking more smoothly and quickly. Throughout the years, I've just attempted to take the med every 12hrs. On those occasions when I'm off-schedule, past the 12hr point, my ability to walk is visibly diminished. I continue to take the Ampyra, though it appears to be less effective lately. A discussion about this will be part of my next appointment. Miriade, thank you for the words about magnesium. I'll check into that.

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Judymax, it's Fancy1959. Ampyra and I did not get along. Shortly after the start of my second month I started having weird side effects from it. I was concerned it was leading me toward seizures so I stopped taking it. Within 5 or 6 days after stopping Ampyra, I was back to normal. Talk to your neurologist. We know everyone reacts differently to different drugs and your nuerologist might have a reason he wants you to be on Ampyra that us non-medical people have no clue about!

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Have taken Ampyra for a number of ears. I think it has helped and no side effects.I am on a Patient Assistance program but I guess per Acorda that program will ceases in Dec. 2017. Will have to lok for some other way to pay for that med. Guess it is going generic in 2018.

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