Wish I knew more about Ampyra. I DO know there's a oral drug Oxandrin (now by Savient) that was a favorite among body builders and it sure worked for putting muscle on if you did the work. Walking times would drop without a doubt if signal still gets to the muscle. It's hard on your internals long term but Ampyra doesn't seem to be very gentle either. There's so many drugs to increase muscle mass out there. I wish neuros were more comfortable scribing/trying them! Ampyra costs more then growth hormone which is 2nd to none.

Strength Update
 

I've been taking Ampyra 1x/day (not twice) and today I did my 100th lap in pool 14'x28' for July! Last month 85 laps. May 0 but 8 miles in wheelchair, April 16 miles in wheelchair to start season off. I feel like someone punched my in the shoulder as I type this but it's a good hurt.

I don't know if it's Ampyra or my drive/strive to do all the laps I can for putting my meds to the test and to kick the ---- out of my MS but whatever it is, I'm doing it.

p.s. No sensory improvements. Still going downhill but the airplane might be diving a less steep angle.

Non related, I've been taking 4000 iu D daily for months. WIll get blood drawn Monday for level. Level was 110 when I took 8000 iu/day and actually felt pretty good. 60-80 might be a good level for us.

I'll go with Ampyra started 3rd week of June 2010 2x/day, 1x/day since Mid July for lack of good soild nights sleep.
The 24 miles were done in wheelchair April - May driven by testosterone weekly injection.
I'm up to lap 235 for pool summer total but testosterone is surely the strength enhaner.
I'm still losing feeling on a weekly basis so Amp is doing nothing for nerve damage in that respect for me.

Test is da BOMB for a feeling of overall well-being, and it is the best way I know to build muscle for those of us over 30 or so.

I did a cycle of nandrolone and test prop (was the cyp your doctor's choice?) last year and I definitely grew muscle. Unfortunately, I can't say that it did much for my MS.

It's not the muscle that is necessarily screwed up with MS, although atrophy sets in eventually due to disuse. It is the nerves controlling the mucle that are screwed up.

I'm a gym rat to the core; church and the gym are the two places that I can go and always feel better when I leave. Have your workouts improved (energy/intensity) with the addition of the Ampyra beyond what you get from the juice?

Last questions: do you cycle the cyp, or just do 80 mg/wk ad infinitum? Do you use HCG so the boys don't shrink?

Pete

Hi. I am usually at Braintalk. Haven't been here in a while but wanted to see if there was an Ampyra thread,

I started it Aug. 4, (13 daze ago). My experience has been very positive so far. It has helped immensely with fatigue, although it was making me kind of jittery. I upped swimming which helps and do some yoga. The twisting kind of stuff calms my central nervous system.

But best of all, today I walked unassisted around to the far side of my house to cut flowers. Haven't done that in a long time. I tried it last week but was barefoot and stepped on a pricker branch. It is now a jungle over there since I haven't been able to get there and be steady enough to have pruning shears in my hand in a few years.

I start a bit of pt next week to try and break bad habits I've developed. I use a Canadian crutch so I kind of hutch over and I have foot drop so look down so I don't trip over...a grain of sand. :eek: It takes nothing if you don't pick up your feet.

My back yard is mostly moss so I figured if I wiped out it would be a soft landing. :D I tried to do the stuff I had learned several years ago in pt: good posture, head up, use core. I've been doing a pilates class for the senior members (and Susan) of the place I swim to strengthen core.

I am hopeful. I have a long way to go but it hasn't been two weeks yet.
The sore throat I have had on a few occasions and whatever else I can attribute to the A is worth it if things continue improving.

Just thought I'd share this.
-Susan

Glad to hear it's working for you, and actually I must say my swimming keeps improving too! Yesterday I went the longest distance underwater (in pool) since I got MS. 1.5 laps in a 28' pool! Was I ready to turn blue? Yes but I did it. Sue you mentioned jitters.. I couldn't sleep between Ampyra and testosterone so I cut the Ampyra down to 1x day (morning) and it's enough to do it's magic. I wish and still don't understand why it doesn't help sensory if it's making jumper wires for my nerves.

It hasn't helped sensory stuff, but I have no expectation that it may. I didn't know that was a possibility. Would be nice though.

Amazing ability to go long distance underwater. I had a massive heart attack 5 years ago, and lungs are scarred from asthma as a kid so my breath isn't what it should be. That said, I do 20 laps 3x a week. Today I'd been listening to a cd of my husband's fusion band on way to pool. Last song was a Dixie Dregs cover. Boy did I swim fast. Normally it takes me 20 minutes to do 20 laps, today it was closer to 15. :p

I don't want to cut down on amount of A if I can help it. I am soooo determined to do everything I can to improve my walking. But...we'll see. Trying to burn off the jitters. :eek:

I just do my "I think I can, I think I can" chant as I go to sleep ;-)

The danger of feeling good is doing way too much. Whoops. Wiped out while cooking dinner turning around too fast. I know better, but boom, minced garlic everywhere, flat on my back. I was fine but it freaked my husband out as pan went flying... Good reminder. :o

OUCh! I hope you weren't hurt..

Ouch! Hopefully it just made a mess and not an injury. Glad you're doing good though!

I'm fine. Thanks, you guys. It was a spectacularly noisy fall.
-Susan

Update
 

Been taking Ampyra once every morning for a few months now. I must say it helped. Keep in mind i've done a couple thousand reps of triceps, handgripper, few hundred pool laps ect. Transferring from wheelchair to couch, bed & car is definitely easier then it was a few months ago AND I cut testosterone shots from .5mL every 7 days to .4mL every 7-10 days (only because it was hard to sleep). Prostate might thank me for it too however it's perfect and psa's 1. I'll increase the testosterone when colder weather comes for wheelchair miles.

On top of those exercises, I pushed wheelchair April & May (pre Ampyra) for a total of 24 miles. I'm at lap 470 in pool and cool weather might stop me from hitting 500 but i'll take 470.

You can't take Ampyra, sit on couch and expect muscle growth. I'm satisfied. Push that bod!

Edit - I'm glad I started this thread documenting my experience with Ampyra.

Ampyra rebound
 

I was taking Ampyra twice a day for about six weeks. I missed one dose and was amazed at how stiff, leg spasms and difficulty with fine muscle movements for balance, became. (Worse than before taking). Then I got on my schedule again. I now changed insurances and must wait for their pre-approval and have one pill left. This is how dependence on drugs occurs so
I will be paying attention to see if things get much worse and if that lasts.

Thanks and let us know. I assumed it only helped strength since my sensory is going downhill no matter what I try. I'll switch to twice a day if it helps spasms. 120mg baclofen/day and they're still terrible. Sudden jolts added to the mix lately.

Rebound - Ampyra
 

Hi I fell asleep before I took my Ampyra last night. I awoke about 2 and felt
OK but when I awoke this morning, the rebound after not taking it was awful
My lower back hurt it was so tight and I couldn't walk and fell. It took me
20 mins. to loosen up enough to get up. I think the company needs to address
this and tell us if we would eventually return to the "before Ampyra" level.
As it was, I grabbed my pill!