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  • lillivonshtupp
    Hello I’m new here but have had MS for 10 years. I had 3 spots for most of that time. 1 spot was in the pain & sentivity part of course, so I have Shingle type pain on most of my body. My left side is mimicking the pain on the right so I’m hypersensitive to touch. Cold is extra hellish & if you ever want information from me just give me a pedicure, I will tell you everything! So that’s a drag. I’ve been managing my pain pretty well with suboxone & prescribed topical meds for 6 years. Last month I had a bad MS relapse. New spots & Dawson’s fingers. First I just had drop foot but a week later I couldn’t write at all & I couldn’t walk w/o help from hubby or kids. 6 days in hospital, pick-line & 5 doses of IVS later I’m about 65% better. Can type & write again, walking is vastly improved but I need my cane. I am EXHAUSTED to a point that I’m useless. So I finally tried Ampyra & had more energy like almost instantaneously. It was great until it lit up my nerve pain. I only took my morning dose too, I wanted to ease into it. After 4 days of increased pain I called the neurologist & he said stop. Gladly. But I need the energy, I like functioning & I haven’t been in my own store in 5 weeks. My hubby is running it alone & I feel terrible about that. I have read so many things idk what to believe. I also know we r snowflakes & every1 is different. But I’ve read that either you have nerve pain & shouldn’t take Ampyra at all, or it makes pain worse for a while but then much better. They both make sense, I was so hopeful the pain would stop. I was nearly in tears last night. So what are others experiencing with Ampyra? I’d love some testimony! Thanks for your time and ear. The end

    Erin
  • jasonprestovfd
    Erin,
    heres my story & how it went for me taking Ampyra. 
    sorry but this is going to be a little long.
    I was diagnosed with MS in 2011 but have had lower back problems since  somewhere around 2000. These last few years I have had increasing difficulty with my left leg. At first it mainly brought on by heat, but slowly became an issue all the time. Last year I hurt my back bad enough that I needed surgery this past January to fix the herniated disc. While recovering I had a bad MS flare up and could barely walk even with using a walker. Unfortunately I fell near the end of January and reherniated the disk worse than before. Had a redo of surgery this past March. I was extremely careful and had a successful recovery. Finally I was completely free from back pain (first time in years). I had ZERO pain, unfortunately my left leg never really recovered from the flare up. I called it my zombie leg because it was like dragging a dead hunk of meat around with me. But I managed it get around ok using my cane (read my profile to get that story). When I went to my usual 6 month neurologist appointment, he reccomend trying Ampyra. So I did, it was great! I did not drag my foot anymore and my leg was actually almost normal. It was great and i thought wow, more people need to know about this incredible medication. 
    but that's not the end of the story.... around the end of week two my lower back pain started to come back. By the end of week three the pain was unbearable and I quit taking it. I figured the pain would go away, right?
    it has not gone away and is currently as bad as it was before the first back surgery. I did a heavy course of steroids (nine days worth), and I'm currently going to physical therapy three times a week. So far I have had no relief from the pain. I am starting to fear that theres a back surgery number three in my near future. 
    hindsight is always 20/20, but I wish I never would have tried it. I would pick dragging my zombie leg around the rest of my life if it meant to never suffer from back pain again...
    I hope this answers your question and you realize that you are not alone. 
    Good luck and I hope you feel better soon. 
  • lillivonshtupp
    First of all, I’m so sorry for what you’ve gone through. I super appreciate your response. I’ll be sending the good vibe your way. I hope it gets better for you. It’s impossible I think to get a clear answer bc MS effects everyone differently in the first place. But I heed your experience, you’re the 2nd person I’ve heard say “the pain has not gone away”. For some it’s supposed to make pain improve, but I fear for cases like yours and mine it gets worse. It’s a shame b/c it did help with walking & energy. I am zapped since this last relapse & it’s really getting to me.
    Thanks again for your help!

    Erin
  • jasonprestovfd
    Thanks for the good vibes. 
    i sinsearly don't want my experience with it to discourage anyone. I just want them to have the info for what could happen.  In all fairness, my doc told me it could cause pain. But all I heard was theres a good chance it will help with the leg. It is what it is, I rolled the dice and lost. But if we don't challenge MS, then it doesn't have an opponent. If we just roll over then it will win. Please don't take my response yesterday in wrong way. I just wanted you to know you weren't alone. There are people who are taking it and it has changed their lives. 
    good luck 
  • maria1
    There is a caution online about side effects to notify your doctor immediately if you have back pain.
  • echobird
    I do believe for myself that in some ways it does cause the back pain to get a little bit worse lately. Also some days it's like a different person I will fill like then other days I feel like what is the point. I have been noticing that it's been more and more like this. If I'm lucky to have 1-2 good days I'm lucky. I have noticed that it's more like a roller coaster ride but it does help some days. Now the pain level has been the same since starting it at least it's not any worse than before starting it. Try alpha lipic acid.