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    #16
    I hope he gets it soon. It would be cool to hear the results of him going back on the medication.

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      #17
      Originally posted by PositiveMS View Post
      I hope he gets it soon. It would be cool to hear the results of him going back on the medication.
      He's supposed to get Ampyra by next Tuesday. Yes, it will be interesting. He's sure not walking well right now.
      Husband Dx'd in 2006. Currently on Tysabri, Gabapentin, Ampyra, Baclofen..

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        #18
        hi, ampyra works for me. in fact it is the only ms tx that has had any significant impact on me. i started the 1st month it was released. it took 10 days to kick in, but what a difference. walking of course, but i felt my feet on the floor, warm, relaxed, and toes not gripping the floor. everything bacame easier, with reduced spasticity, reduced fatigue and reduced heat intolerance.

        it works best for progressive forms of ms and those with advanced sxs. it doesnt change the progression of disease, just keeps you ahead of the curve.

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          #19
          Originally posted by barryrado View Post
          but i felt my feet on the floor, warm, relaxed, and toes not gripping the floor. everything bacame easier, with reduced spasticity, reduced fatigue and reduced heat intolerance.
          That's a pretty accurate description Feeling returning to my right foot was a big factor in helping me walk more steadily. Reduced spasticity kind of snuck up on me. My hamstrings used to be SO tight I sort of walked like a penguin, but now they are almost normal. I'm not even sure when that happened!

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            #20
            I 'm in the percentage that wasn't helped. I took it for nearly two months and had no changes at all. Good or bad.
            Karen

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              #21
              If you can't afford the Ampyra go to, they're a compounding pharmacy. Aminopyridine (4) is basically the same thing. A 30 day supply cost me $40.07 including the shipping.




              **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**

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                #22
                [QUOTE=moose;1448032]If you can't afford the Ampyra go to, they're a compounding pharmacy. Aminopyridine (4) is basically the same thing. A 30 day supply cost me $40.07 including the shipping.

                Does it work for you Moose?

                QUOTE]

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                  #23
                  I have been on ampyra for two years now. I noticed a big improvement in my balance and walking for a long time. Mostly noticed when I missed a dose because I was busy at work. I would start feeling off balance and clumsy. That would be my reminder that I had forgotten a dose. Lately I've been deteriorating but know my days are worse if I miss or am late for a dose. It has really helped me. Good luck. My insurance covers all but 25$ copayment per month.

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                    #24
                    I have MS, 25+ years since dx. Until Dec. 2012, I was fully ambulatory. I had fatigue+ some numbness in my hands and occasionally in my leg/foot.

                    I had a rapid decline that had me in a wheel chair by March 2013. Eventually, a cervical spinal cord injury was discovered in April 2013. The cause is unknown. I had, 7 level, c2-t2 fusion. Yes, that is a lot of metal. My MS specialist treated me for MS, even thinking I might have PML.

                    After surgery in May 2013, I recovered many, but not all of my abilities. 3 days out of surgery I was standing and walking with a walker after a few weeks. I now walk with a walker/cane. I still have balance issues that have not improved much. I have PROPRIOCEPTION balance issues.

                    I have been doing therapy and exercises to help with problems with balance caused by deficits relating to proprioception. I have had minor improvements. My arm and leg strength are close to about 60%-80% of where they were prior to my SCI problems. My bladder and bowel problems have made at least a 50% improvement since surgery in May 2012.

                    I got very excited and will find out from my MS specialist if I might get some help from AMPYRA.

                    That's right, a spinal cord injury took my MS/Neurologist 3+ months to discover. I had severe cervical stenosis. I was having MS (like) problems and everyone, including me, thought MS was finally catching up with me.

                    Sorry to drag on, but while doing some research on SCI I discovered some information on 4-Aminopyridine which led me to AMPYRA.

                    I think AMPYRA will help me. I hope. LOL

                    TY to all who read through this. I hope it made some sense

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                      #25
                      Haha, you didn't drag on, golfore. Your story is quite interesting.


                      The proprioception is a tough one, and I have some of it relating to my right foot too. Just enough to throw everything off a bit. I'm interested in what you say about therapy that helps with balance.

                      I just started seeing a new physiotherapist, to help smooth my gait, and she mentioned we could try balance training. I find it very exciting when there is something more I can do to help.

                      I hope you get the Ampyra, and that it helps you!

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                        #26
                        I hope ampyra will help you. I also have proprioception issues. Sometimes I feel like I'm walking uphill or one foot is higher than another. I have to always watch the ground ahead of me when I walk. But ampyra has definitely made my legs feel less fatigued and clumsy. I don't think I could get through my 12 hour shifts without it. So glad I'm a responder. Hope you will be too.

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                          #27
                          Wow AriD! You must be doing well if you can do 12 hour shifts.

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                            #28
                            Positive MS, Thanks for your response. I felt like I dragged on. Oddly that post took me at least an hour to construct. I wanted it to make sense.

                            Unlike proprioceptive problems brought on be MS, mine are a result of a spinal cord injury. You gave me something new to investigate. "physiotherapist"

                            All of my therapists have, over the last 11 months have had training in neurological/spinal cord injuries. A physiotherapist, sounds better still.

                            Therapy has me doing exercises like,,,, trying to balance on one leg,,,, standing with my feet "heel to toe",,,,,, Closing my eyes.. I sometimes walk in the pool in water up to my waist/chest to help with my balance. I'm sure these are things you have tried also. Over the time since surgery I have had small improvements.

                            I am going to find out about taking AMPURA. Right now I am getting ready to start Copaxone. My neurologist is refusing to give me Tysabri any longer because I'm JC pos. I have been on it for 80 infusions. So I don't know how that would influence me taking AMPURA. Until Dec. of 2014 I felt extremely lucky that MS wasn't causing me big problems.

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                              #29
                              AriD, Thanks for your response. My problems are with balance and my feet and legs are hard to sense without looking where they are.

                              I'm excited to get responses from you and PositiveMS. I want to write more, but my hands and fingers don't work very well. Lots of neuropathy. Please read my response to PositiveMS.

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                                #30
                                My main problems are bilateral leg weakness and balance issues too golfore. I have some leg spasms and vertigo too. Ampyra helps a lot. PT has helped too especially balance/vestibular training. I worked on a biodex balance machine which is a platform you stand on it has a screen in front of you so you have to look up to complete the exercises. If I had made more progress before my referral ran out my PT could have adjusted the platform I was standing on to be progressively more unsteady too.

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