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Ampyra - great improvement walking


When I woke this morning, half asleep in my favorite chair (I started in bed, moved to the chair around 3:30), hearing the door bell ringing and learning I had to move my car to the street because of a delivery, I WALKED from the family room to the kitchen where I found my car keys and then to the garage. I didn't use my cane or my wheelchair!

When I came back from parking my car on the street, I rode my scooter up the driveway/ski slope. I walked from the garage the 70 feet to my wife's dressing room.

I haven't walked that far in a year! I've been using an electric wheelchair indoors and my scooter outside.

The Ampyra is working! I've been taking it for about two months. I've been exercising more, using my recumbent exercycle a couple of days a week, but this walking was because the nerve signals went from brain to spine to legs!

I've noticed over the last few days that when I wake and stretch my legs are not as spastic as they had been during the last year.

My hopes and prayers go out to all of you suffering from MS, hoping that Ampyra or a new med coming down the pipe will make a major difference in your lives.

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Avatar universal
Mark, I am so glad it is working, I should get mine this week, I can't wait to get on it, my walking has gotten worse and I was ready to get a wheelchair (something I always swore I wouldn't do) I will let you how mine does.
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Avatar universal
Hi Shell,

I take 3 mg Tizanidine  (generic Zanaflex) for spasticity, since I started Ampyra I've been taking 1 tablet during the day rather than 2, lately there are days I don't take 1. I usually take a tablet at bed time.

I'm very happy decreasing Tizanidine, it makes me thirsty, and, if I'm reading (my usual state if I'm not eating, driving, or sleeping) I'm prone to fall asleep.

For way too long I've been having trouble falling asleep, and getting a good night's rest. Over the years I've been taking more and more meds at bedtime. Up until last night I would take

Ambien CR, generic Ambien, Lorazepam, Tizanidine, and LDN

On the recommendation of my excellent PCP, Dr. D, I went to the local sleep center and spent a night fully instrumented.  I had in excess of 20 sensors, most on my head, some around my chest, abdomen, and shins.

Last Friday I received an analysis of the test.  Turns out I had a number of sleep apnea events during the first four hours, not coincidentally the amount of time it takes for generic Ambien to degrade in my body, after that I move into REM sleep, but never reach the deepest sleep stage.

Dr. B (not D) at the sleep center (bright fellow, he treated me as an intelligent human being) told me that I should stop taking Lorazepam, he feels it is similar in action and chemistry to Ambien, but with more side effects.

He told me at this time there is no reason to use a C-PAP device, though I think my wife's side of the bed will have one pretty soon; I'll sleep better as a result of it.

He told me to improve my sleep hygiene, beds should be for sleeping and intimacy (please let my wife know, she's forgotten), don't read, don't watch TV, don't listen to music, etc. He also said that I should not get into bed until I am very tired and ready to sleep.

I followed his instructions last night getting in bed around 11:30, falling asleep quickly. I woke, bright and cheery, at 4:07. I did my usual move to my favorite chair, but didn't fall asleep. I checked email in the kitchen, watched Whale Wars and something about Orangutans, at 6:30 installed some light interior screens that had been taken down last week because of home improvements.  Then I woke my wife, fed the cats, and made coffee, most of this while standing or walking. YIPPEE!

My spirits are good, and my body isn't hurting.

The coffee is ready, along with fresh local blueberries on cereal.

My best to all reading this.

Mark

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Avatar universal
Congratulations! That is so wonderful and I am soo happy for you!!! Thank you for sharing this information with us and I will be writing this down to give to my nuero in the near future!

Inny
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198419 tn?1360242356
Good news indeed. Are you on meds for spasticity too?  You mention it's a bit better too and I'm very curious to hear more about this if you have some more before and after to share.

Thanks Mark!
-shell

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Avatar universal
It's great to hear that! Please keep us posted on how you do with it.

ess
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1382889 tn?1505071193
OMG. Congratulations. Fantastic news.  So happy for you!
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