I think it just might of made my walking a tad smoother, but not all day, it’s like every now & then I feel a tiny bit better.
Nothing to write home about though, certainly not enough at the moment to justify staying on it !
Thing is I can still walk limited distances unaided, so I’m thinking that perhaps it works better with on someone who has a an even more limited mobility than myself.
For instance a 10% improvement on me wouldn’t be as noticeable as much as a 10% improvement on some with worse mobility, if that makes sense ?
That’s what people have said to me that walking was a bit smoother,I thought I noticed that with myself. My neuro said I was perfect for it as i walk with a crutch and slowly. He said he had people that didn’t need a crutch when they were on fampridine. I know 1 guy who had a great experience of it and like you he was able to walk unaided and fairly long distance. A 5% improvement for me would be huge. Im stuck with baclofen and doesn’t do much. I would go for your assessment and you might be surprised by the difference in your walking speed and if you’re not then you can decide to stay on it. At least you can say you tried whether it’s good or bad.
If it’s any help, my MS specialist suggests food one hour before or after Fampridine is fine. With my mobility very limited, I know my digestion takes longer than one hour but I find that Fampridine helps enormously with MS fatigue, and a little with walking speed, so it’s worth persevering with.
Jen, does taking Fampridine 10:30pm keep you awake? I’m really struggling with timing it. MS nurse suggested 7am and 7pm (food one hour either side ok) but my blood sugar’s on the floor waiting till 8pm for supper, esp. because I try to observe the OMS protocol which is low on protein.
When prescribed Fampridine my first question was can I take it with a cup of tea and the answer from my MS doc was “of course you can”. MS has slammed many doors in my face but I’m not letting it take away my cuppas!
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Hi Pennyanne,
Since my post in February I now only take 1 Fampyra per day at 9am.
My neurologist said that it gets to a stage when it won’t help anymore so suggested I cut down to 1 tablet or stop completely.
Sounds like it just masks the deterioration which I didn’t know.
Have cut down to 1 and will stop altogether at Christmas when I don’t have to go to school and see if taking non makes any difference.
As it’s a private prescription of about £186/ month (England you pay, Scotland and Wales, you don’t) it makes a difference to my purse!
Let us know how you get on.
Jen
Yes I am currently taking Fampridine.
I have got a schedule of 11:00 am and 11:00 pm.
I set a phone alarm to remind me every day.
So far I have not noticed any side effects, this is only a trial from my local hospital.
I am going back there on the 17th of this month, possibly to end the trial - I haven’t noticed any effect on my walking, like you I am from Wales.
John
combining medications with a nutritious diey could potentially aid in improving overall health outcomes!