Walk This Way
I took the plunge.
Like many of you with multiple sclerosis, I joined the rank & file and am now taking Ampyra (am-PEER-ah).
Ampyra is the hot, new MS drug on the market aimed at improving walking speed for those of us slipping lower on the evolutionary scale.
All together now, in your best Casey Kasem voice…..”And now a long distance dedication to a lowly foot-dragger in Ohio.”
Ampyra works by “fast-tracking” the conversation between your brain and your legs. Kinda like the fast talking guy from the old FedEx TV commercials.
It has improved the walking speed in 30 to 35% of MSers who have tried it. Granted that’s not a great success rate, but when I have to use a calendar instead of a stopwatch to measure my walking speed I’ll give it a whirl! (You gotta figure Keith Richards has taken worse, right?)
Ampyra, like all medications, has some possible side effects, mainly kidney or bladder infections. But I thought a couple of the most common side effects were amusing…..”weakness” and “problems with balance.”
Duh, problems with balance is my middle name! My balance can’t get any worse. I’m like the “Anti-Weeble!”
Also, how ironic, one of Ampyra’s inactive ingredients is “hydropropyl methylcellulose.” That is the SAME name we kicked around for our youngest child!
Seriously, the cool thing about Ampyra, according to my doc, is you’ll know if it works right away. And if it doesn’t–well, stop taking it. That was my biggest beef about MS’s “ABC” drugs, I just didn’t know what they were doing.
It’s only been a few days for me—too early to make a call yet. But I’ll keep you posted.
Have you tried Ampyra? I would love to hear what it did for you.
I’m not advocating anything. Remember, My Odd Sock is an expert on nothing, just an idiot on everything. Consult with your doctor to see if Ampyra is right for you.
And so it goes, putting one foot in front of the other.
Here’s hoping mine (and yours) move just a little bit faster!
14 Replies to “Walk This Way”
You definitely need to let us all know how it works for you. It was mentioned to me at my last Dr Appt and I go back again in about a month. I can’t wait to hear your scientific reports on Ampyra. 🙂 Doesn’t that name remind you of some heavy metal group or something. 🙂
Best of luck to you, Doug, I hope you see a dramatic improvement. I have several MS friends who have tried Ampyra–with varied results. Some saw no improvement, others experienced a bit more ease in walking, still others swear it has transformed their lives. I’m going to remain a holdout for the time being.
Speck,
Yes, My Odd Sock is the New England Journal of Medicine for morons. And you are correct about Ampyra sounding like the name of a heavy metal band. I believe I saw them back in ’79 when they opened for Dokken.
Very funny observation. Thanks!
Dokken, they made Dream Warriors for Nightmare on Elm Street 3. They also opened for AC/DC. Good memories there now. Hehe. Their basist Juan left to join RATT. I don’t remember much more…now is it the MS or the loud music and whatever else goes with it causing the brain lapse?
Cool site-ul!
Thurs has been 9 weeks ampyra for me. Odd part is I don’t feel like I am walking any faster- but it is a lot easier to take steps. My legs feel lighter and I don’t feel like I am walking through waist deep mud. Before I would step with left leg, push, then really push/ drag my right leg through the mud. I had to really swing my right hip to get that leg around. Within first days of taking ampyra I felt a difference. Also for two years I wore an AFO brace, total drop foot. When I was told I needed the brace, I cried, but when I got it, my foot was like ah- what were u waiting for? LOL But within two weeks of ampyra. all of sudden the brace felt uncomfortable, like it was holding/ choking my foot! So I took it off. I know it is working cause I don’t here that kitch kitch kitch sound, of my foot scraping the floor when I am walking and I haven’t tripped forward in weeks- fall sideways, backwards, yes, but I digress… the AFO used to prevent those kind of trips- but now the ampyra seems to be doing it!
THe best part is my legs used to twitch, jump, move, kick etc. all night long. My theory is the messages my brain was trying to send all day finally got through at night. Like oh did u want to avoid that puddle today, here u go and I’d wake up to my leg pointing straight in the air! Within a few days taking ampyra, my legs and I sleep through the night! If I complained to my neuro that i couldn’t sleep at night. because that’s when my legs were most active and she said here take ampyra- and that’s all it did, I’d still be happy.
Worst part- with a week of being on it- we were hit with a heat wave- with high humidity. SO I really don’t know what more this drug will do for me. But I do know, past summers, which haven’t even been as hot, I was stuck in bed. I have really been able to do more, in this heat then ever!
I can’t wait for it to cool off and hope for continued success. I don’t care if I need my cane for ever- I’ve come to terms with it, but I’d love to be more graceful!
Now if they could only develop a drug for balance? An ampryra II? LOL
Hope u have success- keep us posted!
Patti Ann,
Thanks for your Ampyra insight—this Odd Sock needs a little lift as I’m not feeling it. Will give it more time and let you know.
Thanks for reading and sharing (and yawning if you are like most readers of this site)!
I can’t say I’ve been one who has ever been accused of being normal however, after being on Ampyra for about 2 weeks I at least have returned to walking normal. It’s been a while since normal walking was a part of everyday life. Now that it has returned I’m looking forward to finding something else to bitch about! Just kidding now if I can only convince a COP my balance problem is due to MS and not the eight beers I had when I get pulled over…………..
I’ve been on Ampyra for about 5 weeks now. I have had MS for 29 years. It took about 25 days before I noticed a difference, not so much in walking, but just in my ability to stand. Before it was only after a few minutes of standing that I felt the need to find a chair, or I would be face-to-face with the floor. I’m definitely able to stand much longer now. Good luck, everybody!
Dear Hubby has been on it a little over a week now. I’m not sure if he’s noticing an improvement but I think he is walking more.
I’ve posted about it and his difficulties in getting it on my blog.
Odd Socks- I am loving ure site. I read about it this month in Momentum Magazine and ran (okay limped slowly) to my computer to find ure site. I believe laughter is the best medicine and the MonSter gives me plenty to laugh about! Like today, fell forward into bathrooom door and slid slowly down the door with my face pressed against it! How could that not be funny!
Been on ampyra for almost 10 weeks- my legs def feel lighter, easier to step, but its been extremely humid most of the weeks Ive been on it, so fingers crossed I’ll do better when it cools off!
Hope it “kicks” in for u and please keep posting ure funnies!
I, too, read about your site in Momentum. You caught me with the “I’m the one with grass stains — on my shoulders” Since I walk mostly on gravel roads or pavement, I’m more the one with bruises or road burn on my shoulders. I went to the sporting goods store to get some braces and pads. Have you seen the commercial with the woman doing Roller Derby? I wanted to see if I could get all the pads and braces that she wears, so I asked the clerk where the Roller Derby section was. She directed me to the Skateboard section. When I came back with my wrist guards, she looked at my left arm, with the dark purple bruises that almost look like a tattoo and my scarred elbow and asked “So, how long have you been doing Roller Derby?” I told her that the only extreme sport I do is walk (I think she thought I was embarrassed about the Roller Derby and was making a lame attempt to cover it up).
Thanks for your blog! p.s.- I think I saw Ampyra opening for the Misfits in 1982!
I am not on Ampyra yet. Recently my neurologist gave me a scrip for steroids which had possible side effects of “psychic derangements may appear ranging from euphoria, insomnia, mood swings, personality changes, and severe depression, to frank psychotic manifestations”
Love your web site. Thanks for keeping us laughing.
I also found your site through Momentum Magazine. I’ve just started exploring & I like what I see. I can always use a laugh.
I started Amprya on 7/17 even though my neuro wrote the prescription on 6/3! I’m not sure exactly who dropped the ball – the mail order pharmacy, or the drug company, but it sure took awhile to get it.
I have PPMS & noticed improvement within a few hours of taking the first pill. Because of the possible side effects it was suggested that I only take 1 per day for the 1st week. I’m not sure if my walking speed has increased but I feel a whole lot better. I had felt lilke I had a layer of concete just under my skin that got thicker & thicker lower down my body. By the time the concrete reached my feet they were solid cement blocks. The whole 1st day it felt like the cement was breaking up. I almost didn’t realize how bad I felt until I started to improve. I feel like I’ve gotten more of my life back.
Your post is a little old so I’m hoping you are now also feeling positive results.