Forum

I'm better than I was a year ago - first time ever

I went to an annual works do with my husband on Friday night. The other people there commented on the fact that I missed last year’s do. I hadn’t remembered but I didn’t go last year because I could only walk with two sticks, my bladder control was terrible and I was sleeping every evening. All these symptoms were with me for months and I don’t think it was a relapse because the symptoms went away in response to me going on new drugs. They mostly disappeared when I started on Fampyra.

Anyway, I’m very happy to have improved over time, rather than deteriorated. Like I said in the title, it’s the first time since I’ve had MS.

That’s excellent :slight_smile: x

so very pleased for you, i have been really ill for over a year now,so this gives me hope.

jaki xx

BRAVO…Imagine the trouble you’ll be able to get into at the Christmas party

Wb x

Good news, long may it continue :slight_smile:

Wonderful news. Thank you for cheering me up!

Alison

Very pleased for you and cleary it is giving others hope too. Thank you for sharing.

Peter

That is great news. How are you getting on with the Modafinil?

Dawn x

That is great. Can I ask you if your legs feel any different - I mean less jelly like? I know that it improves walking speed but in what way. For example is spasticity improved or do your legs just feel stronger, or is balance better. In fact what changes occur so that you can walk better?

I have a cervical lesion with spasticity in one leg. My neuro thinks fampaya might help although I dont have an MS dx. I might have had damage for radiation treatment. Essentially my legs dont get full nerve signal.

I am really pleased to hear how much better you are. I was concerned a few weeks ago form one of your posts which you indicated that improvements that you had first noted had gone.

Take Care

Moyna x

Hi, this is fandabbydozey news! makes a change from the usual deterioration, most of us feel,eh?

Thanks to fantastic Fampyra!

luv Pollx

Thank you all for the good wishes - warms my heart.

For Moyna - I’m afraid I don’t really know why my walking is better. My legs don’t feel any different. When I do the walking speed test with my physio, I can go faster but it doesn’t feel different. I’ve said elsewhere that I started the Fampyra back in October and have been doing a 25 metre walking speed test at the end of every month since then. Each of the first five was faster than the previous one but I think I’ve stopped getting faster now. I hope I’m not going to get slower again.

I don’t know why I can walk with one stick now, when I used to need two or I was in grave danger of falling over. I don’t think it’s a balance thing, it’s more that my legs are acting like a well persons’ legs, not so much of that sudden giving way or going in the wrong direction. I’m not sure what spasticity means - is it going stiff or jerking about? I get stiffness when walking but only get the twitching when I’m sitting or lying down.

Don’t know whether this reply will get published or not, as I did reply to this thread last night and got the ‘your response is being forwarded for moderation before being published’ then was never published!!!

Not sure what I said wrong in the thread, but I keep getting e-mail notifications about replies to this thread but mine has never appeared.

Was just wondering how you were getting on with the Modafinil?

Dawn x

That’s wonderful news, how lovely to hear good news, long may it continue for you. Janet x

Hi Dawn - trying to do this in brief because I’m meant to be writing minutes (ugh) and I am going to do a full update on the Modafinil in a few weeks. I started on the Modafinil last Thursday, but have only been prescribed 60 tablets til I see my GP in 5 weeks. That’s one tablet a day for ten daya and then on to two. Not seeing much difference in my sleeping so far - having a nap every day. But have noticed a big difference in fatigue and motivation - basically feel much less tired in general and much more motivated to get stuff done - much less lying on the sofa going on. Ironic, because the doctors will prescribe it for excessive sleepiness but not for fatigue. I’m hoping the excess sleeping will go when I get on the full dose. I’ll post about it.

I also have been feeling absolutely great since I started taking the Modafinil, but that may be just because I was expecting to or because I finally managed to wangle a prescription out of my GP (he wasn’t keen on givng it).

Thank you for this thread because it has given me hope. I’ve been the same for 9 months and it feels like a long road with no truck stop in sight !! Xx

Thanks for your reply sewing chick. I have spasticity in calfs and quads. Which means they dont relax enough for me to bend my knee or flex my foot enough. I dont actually jerk or twitch as such. My knee just wont bend enough for me to clear my foot. So very frustrating.

So glad that you are felling so much better.

Moyna x