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My experiment of not taking Ampyra

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Unread 12-07-2012, 11:06 AM   #1
Sparky10
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Default My experiment of not taking Ampyra

Been on Ampyra for over a year. It helped my balance and walking ability within a week. Now I'm seeing a chiropractor. His manipulations helped my walking right away! I was walking almost normally for a while. It is still way better and I'm wondering if I can do without the med. The thread about treating MS naturally is what prompted me to try this; I'd been thinking about it for a while.

I was taking Ampyra twice a day. Yesterday morning I took my usual pills but not the Ampyra. Same with my bedtime pills.

My BF woke me up a few times because I was twitching. He often does more than twitch - he flops around, kicks, and punches! But I can gently rub his back or arm and he'll go into a deeper sleep (sometimes). So he tried this on me.

Normally I sleep motionless all night, only waking to roll over maybe once if there's not a cat on or against me. I remember BF waking me twice because of the twitching last night, the second time we talked about stuff for a while and I had a hard time getting fully back to sleep.

So, was the twitching due to the lack of Ampyra? I might find out tonight. Or not. I'm about to take Rosie for our morning 4/10ths of a mile jog. Will keep you apprised of my walkability!
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Unread 12-07-2012, 11:47 AM   #2
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Interesting. I'm still waiting for my prescription to arrive. I'm hoping it will help my walking which has gotten progressively worse over the past year. It'll be interesting to see how stopping it affects you.
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Unread 12-07-2012, 01:19 PM   #3
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maybe you should only cut the med by half the dose for a wk or so.
then try stopping. i'm not a dr so you should ask yours.

hope it all works out for you.
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Unread 12-07-2012, 03:22 PM   #4
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Agreeing with Nurse Nancy. I'm hoping you did check with your doc before abruptly stopping a med.
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Unread 12-07-2012, 06:23 PM   #5
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I am interested in your experiment w a caution. It is always good to be kind to your body and withdraw very gently from anything that it usually gets regularly- even things that are not labeled to need such care.

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Last edited by ANNagain; 12-07-2012 at 09:54 PM.
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Unread 12-07-2012, 11:14 PM   #6
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You guys are all correct, of course. I should check with my Dr before playing around with my meds. To be honest, I didn't think about it. I forgot - didn't give it a thought. I forget that my Drs here are actually interested in my condition. Unlike the loser Drs in Mississippi.

With that said, I did my a half mile jog with Rosie today, no problems. Worked in the garage going through boxes for a couple hours, no problems.

Seems like maybe my foot drop is worse.
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Unread 12-07-2012, 11:26 PM   #7
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I'm interested to see how it goes, Sparky.

I think I said that I had to drop the movement disorder pill (which controlled twitching at night) because my BP was high on it. BP back to normal. So far, only twitching half the night and sleeping half the night. I get up and drink Ginger tea and that always seems to help. I had this under control for years on magnesium, but that's not enough now. It was completely controlled. You might try getting enough magnesium (my dose is high, 1050 mg a day in a divided dose). It did the anti-twitch and anti-jerk job for me for over 20 years. Praying for a non-twitch night for you and for me.
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Unread 12-08-2012, 09:40 AM   #8
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Just the fact that you can still jog is a good sign overall. I cannot run, jog or even climb stairs. Walking is getting more taxing by the day. I'm wondering if I'm past the point where Ampyra will help me? I'd be interested to know what your doctor says about titrating off this med.
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Unread 12-08-2012, 12:44 PM   #9
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On this morning's shortened jog, my legs felt heavy and the foot drop is even more pronounced. I probably could have made the entire half mile if not for extenuating circumstances. Mainly, I was wearing a newly discovered pair of pants that are too big and kept drooping.

The heaviness in my legs is not a result of not having been to the chiropractor for 10 days. (I see him every 2 weeks) The foot drop may be. The fact that my right arm isn't swinging when I walk is due to that. The heaviness makes it hard to go up stairs and causes quicker fatigue because I'm working harder to do normal things.

Not sure what caused this morning's sudden cog fog. Just stared at my computer for several moments. Forgot what I was going to search for. Realized I completely missed Friday. Thought yesterday was Thursday all day and was literally shocked to realize today is Saturday.

I'm going back on the Ampyra starting right now! *gulp* just dry-swallowed this morning's dose.
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Unread 12-10-2012, 02:46 PM   #10
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Good plan if it does the job without side effects.

I had foot drop once for a week, went away. I now have to be VERY careful on stairs because not only are my feet numb, but I suspect some degree (slight) of foot drop. You remember I fell down the stairs 18 months ago at my nephew's and broke my kneecap, due to not hanging on to bannister. Now I hang on to bannisters with both arms, watch every foot placement. I hope I can still do this in future, as I cannot visit my son if I can't.
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