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Old 11-09-2014, 10:06 PM #1
MSbelle MSbelle is offline
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Default Fampyra/Ampyra

I've been taking this for 9 days now and just had a relapse. This was rx'd to help my walking and instead I can barely walk. Has anyone been on this before and have any "light at the end of the tunnel" stories? I want to stop it just in case it's what's caused me to relapse, but they want me to stay on it for four weeks and see if it works... should I? They don't know about my relapse yet since it's the weekend but I guess they'll tell me how to proceed tomorrow when I call.
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Old 11-10-2014, 06:06 AM #2
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I would love to offer you a 'good news story' on this one, but Fampyra was DEFINITELY NOT my friend.

My boss sent me home from work after I admitted that there were two (sometimes more) versions of her floating through my vision in a cyclical fashion.

I felt totally spaced out, and a week later, I felt I was so close to fitting I explained to my learner driver daughter what she should do if I had a seizure - during her first long distance drive - while she was out of phone service - many, many miles from anything.

This was after I nearly soiled myself in epic proportions at a busy shopping centre - thankfully I made it with moments to spare.

So, even after my doc offered me a much reduced dose, I trialled but declined when it was still bad.

Having said that, I know others on it that think it's great - so these are just my experiences.
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Old 11-10-2014, 01:45 PM #3
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OK well I just emailed my MS nurse to tell her what's going on, and she reported back that my neurologist wants me to stop the Fampyra and start Baclofen (I told her that my spasticity is at an all time high). I'm so relieved with this because I'm pretty certain the Fampyra caused me to get so much worse. Phew
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Old 11-10-2014, 02:33 PM #4
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