Comments on Wheelchair Kamikaze: Coming Soon: Three New Oral MS Drugs

i'm on ampere for about 1 yea.r lost med. abou...

2011-06-16T01:58:29.756-04:00

i'm on ampere for about 1 yea.r lost med. about 6 mo ago didn't take it for about a month what a differences not having it. started back on ampere again will stay on but i lost my med again. so i need to try a way to get it. have to wait about 1 year for medicare .state med said making to much from ssdi thats what i get for working for 30 years

I've been on Ampyra about four months and find...

2010-08-24T20:56:44.729-04:00

I've been on Ampyra about four months and finding a bit of improvement in movement. I can step over small thresholds, while before I had to grab my pants to lift a leg. My physical therapy coach has also commented on my better movement on the exercise mat. Make no mistake, I'm not at a point where I can abandon the walker, but I'll take the modest improvement.

No.........I tried it for one month...Very expensi...

2010-08-12T13:39:45.508-04:00

No.........I tried it for one month...Very expensive, side effects.........nausea, back pain, dry mouth..........
I stopped after one month...
Currently on Tysabri, since January 2008...
Dx'd since 1994....hard, so hard.............the best of luck to everyone. Stay strong, we just have to..........

Has anybody found the use of Ampyra to be benefici...

2010-07-15T16:18:45.204-04:00

Has anybody found the use of Ampyra to be beneficial?

Hi Marc, my hubby Curt has ppms. dx in april 2009...

2010-04-01T20:04:19.148-04:00

Hi Marc,
my hubby Curt has ppms. dx in april 2009 so it's still pretty fresh. we notice big changes by the month with his right leg and his right hand acts up too. I'm just wondering do you have pain all day long?? And do you take anything for it without falling asleep? He takes 10mg baclofen so he can sleep at night and forget about hte constant pain, i guess spasticiy is the name for it. During the day he takes xenaflex 5mg always at lunch, it dulls it a tiny little bit but he still feels. he doesn't take any other medication because he is in the BG12 trial, if placebo or not, it hasn't done much. He has been on BG12 since July 2009.
I wish we could find some for the pain without making him sleep. It hurts me as much as him seeing him in pain. I'm sure your wife feels the same. We have no children so i constantly want to take care of him. He tells me there will be time soon enough for that. He still can walk, but not much. He is Irish 25% and rest is all German- is that the reason he doesn't want to take any help, i mean a cane etc. I'm fullblooded German, we have been togehter 28 yrs incl the 4 yrs he was stationed in my hometown 'Hemau', Bavaria Region.
Anyway, hope i don't bother your, just would like to know from someone else with the PPMS if anything can be taken for the pain.
It's greatly appreciated, and keep up your stories. I read them all the time.
Regards,
scroeglin@yahoo.com

One thing to consider: for those of us on Tysabri ...

2010-02-07T19:39:59.882-05:00

One thing to consider: for those of us on Tysabri the threat of skin cancer seems a lot less frightening than the threat of a deadly brain infection (PML). I will most likely be moving over to one of these pills when they come out. Same efficacy as Tysabri but no deadly brain infection? Sounds good to me!

Ampyra will cost slightly over $1,000 a month. Li...

2010-02-05T00:21:14.500-05:00

Ampyra will cost slightly over $1,000 a month. Like the CRAB meds, Accorda Therapeutics, (biotechnology company that developed and holds the patent on it), will help patients with their co-pays and paying for the drug. Will Medicaid cover the cost? The website for the med is ampyra.com or try googling accorda therapeutics. You'll get lots of info. I agree, symptom management is a port in a storm. Time to find the etiology and maybe a cure. MS sucks, but I LOVE yur blog. Had I not been diagnosed, I wouldn't have found it. Thank you for making me laugh and think. Great photos, you have incredible talent.

I'm a fellow New Yorker now living on the West...

2010-02-02T20:05:04.358-05:00

I'm a fellow New Yorker now living on the West Coast with MS and love your blog. I just voted you "Best Patient Blog" on all my browsers! Good luck!

And a more salient point, thank you for this blog....

2010-02-02T18:06:56.629-05:00

And a more salient point, thank you for this blog. Your writing and photography are inspired. That sounds fruity, but it's accurate.

I spoke to my neurologist recently about Ampyra/4-...

2010-02-02T17:49:41.221-05:00

I spoke to my neurologist recently about Ampyra/4-AP and she mentioned that dosing has to be very carefully regulated as you can end up cookoo in the emergency room not knowing who you are kind of crazy. Nice. And what I've read totally supports what you said, Ampyra is going to be waaaay more expensive than the get it at the compounding pharmacy variety. Nice again.