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04-06-2013, 06:46 PM | #11 | |||
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In Remembrance
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Lyn, so sorry that Ampyra doesn't agree with you...
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | Lynn (04-07-2013) |
04-07-2013, 07:26 AM | #12 | |||
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Member
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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
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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04-08-2013, 08:40 AM | #13 | |||
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Senior Member
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Sounds like a good plan, Lynn. Bon voyage!
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RRMS, diagnosed '00 Everything will be alright in the end. If it's not alright, it's not yet the end. |
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04-10-2013, 09:28 AM | #14 | |||
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Member
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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
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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04-10-2013, 05:21 PM | #15 | ||
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Junior Member
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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. |
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"Thanks for this!" says: | SallyC (04-10-2013) |
05-04-2013, 09:54 AM | #16 | |||
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Member
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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
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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05-04-2013, 10:14 AM | #17 | |||
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Elder
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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.
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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05-04-2013, 11:43 AM | #18 | |||
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In Remembrance
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I won't advise you on the Fampridine..UGH!!
But so glad that your trip was successful.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | ANNagain (05-04-2013) |
05-04-2013, 02:54 PM | #19 | |||
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Wise Elder
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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. Last edited by tkrik; 05-04-2013 at 05:27 PM. Reason: typo |
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