Ampyra-do you think it's worth trying?
 

I (along with Kitty :)) have posted about our gait problems causing major hip pain.

I would love to be able to not have to take narcotic pain meds to make walking and sleeping on my side bearable.

I am wondering if Ampyra might make enough of a difference in my gait to help with the hip pain? My neuro hasn't mentioned it but he usually doesn't push meds on me unless I ask.

What ate your thoughts about this drug? I'm ready to try just about anything because the hip pain is near constant without the narcotics.

I think Vonn is taking it with good results. Maybe she'll pop in here and give you her opinion of it.

I wish I had better insurance and I might try it. Anything to help this gait. :rolleyes: Especially after I've been sitting for a little while.......ugh. I have to stand there until my legs get the "message" that I want to move! :mad:

Good luck....let us know how it works if you decide to give it a try.

I googled it and found this site:

http://ampyra.com/home/?ssva_vid=f64...arch/index.php


"The most common side effects of AMPYRA include: urinary tract infection; trouble sleeping (insomnia); dizziness; headache; nausea; weakness; back pain; problems with balance; multiple sclerosis relapse; burning, tingling or itching of your skin; irritation in your nose and throat; constipation; indigestion; pain in your throat."

WHY does everything have to have so many side effects?? :mad: Some of the ones listed I already have with MS!!

Unfortunately every possible side effect any twit reports has to be listed. :( I mean really: multiple sclerosis relapse? how the heck can anyone determine what causes our relapses? Check out meds like asprin or tylenon, same thing.

The other thing I have seen in myself, on these boards and with patients in real life is the minute something changes it is all the sudden the fault of the medication. Not that new medications aren't a good suspect but for example I had a very somatic patient this weekend on a medication that he read online could cause tingling. He presented with tingling on his right side. Knowing this could be a million different serious issues we did a full assessment on him and nothing appeared anormal. I educatd him that it would be unlikely, not impossible, to have a unilateral reaction of this type. Well the next morning it had "spread" to his other side although by noon it was gone, so who knows?

FWIW I would try anything to help with mobility and if it didn't work or the side effects weren't tolerable at least I would feel like I gave it a try.

What ate my thoughts? Um . . .MS? :D:D Sorry, I had to say something. I got a kick out of that.

Anyhow, yeah, Vonn is taking it and has seen good results since starting it. Hopefully, she will come along and post what she has noticed and experienced. If not, we'll nudge her to come to your thread and post.

I take it. I also take testosterone which in my opinion is far superior for strength. Do I notice any potassium channel blocked myelin improvements? For sensory- absolutely not, still going numb weekly. Motor function? I have to admit I do a heck of alot more since I started Amp. I also push myself every day (sore right now) all I got & eat at least 100 grams of protein.

I read someone was worse when they stopped taking it then before so factor that in as well. I'll keep taking it & pushing myself. No side effects here.

For strength look into testosterone ($100 for 4 months worth, 12+ months worth for woman), raising red blood count, b12 for energy. Get them all to upper limit of range.

What a Freudian slip/ typo that was, ROTFL!!!!

okay .. here I am :Wave-Hello:

now - this med has the same side effects as almost EVERYTHING else .. except ... if YOU suffer from any type of seizures the doctor will not put you on it ...

let's see - as of yesterday - I've started AMPYRA ... one tablet in the morning and one when I go to bed ...

the other morning (I believe it was tuesday) .. I got up, walked to the bathroom to clean up and thought 'HEY, you weren't stiff getting outta bed and trying to stand up!!' ... it was a praise report for myself ... haven't said anything to the doctor yet ...

BUT, I do know - that if I try to stand for TOO long, the hip pain starts up - but, then I know it's time to relax and enjoy quiet time (a good movie)

I've also increased my fruits and vegetables (if you don't eat enough - try the new FRUIT FUSION from V8 ... it also comes in 6-pk cans) ...

I hope this has helped ... this is just me (I did ask EddieF on a PM about it - and he encouraged me to try - if I qualified) ...

now, my MS doctor brought it up - I didn't ... so, emphasize your hip pain and walking/standing ... AND you will need to get a Pre-Authorization from your doctor for the prescription ..

PS: I also sleep good at night .. which has helped ... keep me posted!!

Thanks, Vonn :). I'm going to talk to my neuro about it when I see him next month.

My insurance would not approve it. They said I walked too quickly in the timed test even though I need to use a cane.:rolleyes: I am fine for 25 yards. I slow down a lot after that.