Lyn, so sorry that Ampyra doesn't agree with you...

I don't know if I am prone to seizures - don't think so??? I had a couple of very strange turns twelve or so months post brain surgery where my speech was all garbled and I had numbness down one side - but they attributed that to 'headacheless' migraines.

Whichever way it goes, I am not prepared to risk that, four days out from the cruise, but my legs DO feel better, so I think I will continue with the night tablet (if the doc says that is OK and will still help).

Thanks to everyone for your support and kindness.

Lyn x

Sounds like a good plan, Lynn. Bon voyage!

Ok, have now had a major night reaction with major tummy upset, and waves of heat (like you get when you have a CT with contrast) through my legs and 'nether regions' - kind of like hot water running down my legs - like I had wet myself. Kept me up all night. Followed by extreme fatigue, nausea, tingling buzzing etc. Reported it to my neuro, and he suggested that I stop taking it until after my trip away.

Good choice - but I will keep trying when I get home. On the bonus side, I found out that I am feeling lots of sensation where I have been unable to feel sensation (or not much) for a long time .

Cheers

Lyn

Have a good time on your trip.
I know I have been feeling sensations that I have not felt in the past year. I can now move my toes and feel the bottom of my feet. Which is probably why I can walk better.
I hope you can start back on it when you return without the reactions. I can walk with a lot more ease now that I'm on it, even did a little jog across my dinning room the other night. I haven't even attempted to jog in the past 2 years or longer.

Hi everyone

Back on dry land after an amazing cruise, and now my next question is whether I should give Fampridine another go - or quit for good since I had such a miserable time when I tried it.

I am not one for giving up easily - I was on Beta for eight years, before I said enough is enough of the flu and depression side effects.

What I am wondering, from anyone who uses it/has used it, or knows someone who uses it; is, do the side effects diminish over time? If not, I can't sustain the effects that I had (and still work) so the decision is an easy one.

If it does get better/go away, then I have to choose a time when I can resume taking it with minimal disruption to my lifre/work balance.

I sound rather melodromatic, but quite frankly, it scared the living &%@#$ out of me - and before I did resume, I would be asking for a kidney function test because the effects seemed to be cumulative, with effects getting worse and worse every day/night - and they are not supposed to. I was also retaining a lot of fluid and my 'waterworks' were not functioning well.

Thanks for any information you may have

Lyn

I tried it three years ago and it made me more fatigued and I didn't notice any improvement in walking or leg strength. Since I have to stand all day at work, I stopped it, the side effects were too much for me.

I won't advise you on the Fampridine..UGH!!

But so glad that your trip was successful.

Yikes, Ann! You would be brave to try it again. I would have given up. Let us know what you decide to do.

I'm glad you had a great time on the cruise.