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Eager to try

PostPosted: Thu Dec 16, 2010 11:25 pm
by Algis
I am really eager to try that; as it is said to help a lot in movements issues. It will probably not make me walk; but if it might help with my arms I would be already very happy to resume working on-line :?

Ampyra is not available here yet; and I could not find any pharmacist willing to compound 4-AP for me; as it is a very controlled substance here (poisonous?).

Import of medicine is also very regulated.

Anyone who can comment?

PostPosted: Mon Dec 20, 2010 8:35 pm
by Kar
My neurologist has offered it to me several times (in Canada). Isn't that the drug that was first used as bird poison? I'd have to read a lot of good testimonials before considering it. She was suggesting it for improved walking.

PostPosted: Mon Dec 20, 2010 9:43 pm
by Algis
Yes; it was used as a bird poison. But we are much more massive than birds; the dosage is lower than the danger's threshold and Ampyra has a slow-release effect.

If it help me to at least stand by myself for bed/wheelchair/toilet transfers I'd be very happy. If ever it makes me hand write again I'll burn a candle :P
I loved hand writing, and walking in the woods... Am I cursed somewhere 8O

If and when it is finally available in this country I'll report.

PostPosted: Sun Jan 09, 2011 10:52 am
by Slumby
I was prescribed Ampyra about 6 months ago (united states).
I also can't really hand write any longer, and "walking" is a term I use loosely. It's nothing but wheelchair for the occasional outing these days. But I digress!
I'm not sure if it's helping or not. I do miss a dose here and there, and when I do...I guess it could be called withdrawal.


PostPosted: Wed Feb 23, 2011 12:45 pm
by evie1954
I started using Ampra in 4/2010 and it is not a miracle drug. My docter inform me that you should see results in 6 weeks. I notice that I can walk faster but not better. I use Bioness in the right leg to help me walk. I guess if you are not too disabled it might work better.

Re: ampra

PostPosted: Thu Mar 03, 2011 9:40 pm
by DenverCO
evie1954 wrote:I notice that I can walk faster but not better.

Faster works for me!

PostPosted: Fri Mar 04, 2011 7:23 am
by evie1954
I guess faster is better than slower for some . I rather walk better and not lose my balance, even if is slower.

PostPosted: Fri Mar 04, 2011 7:59 am
by Algis
I would rather even 'only walk'; with or without balance ;)

What is better is not worse; but I wish you'll never have to say that... :roll:

PostPosted: Fri Mar 04, 2011 8:12 am
by evie1954
You are right about that. I wish no one had to say that :(

PostPosted: Sat Apr 23, 2011 3:55 am
by msmything
I too was eager to try this formulation, even though most of my disability is cognitive. I can walk pretty well, but I am VERY clumsy, walking ony next to walls to stay on target, and walk with my head down and with a partner so that I don't lose my way.
I work in an ER, and a couple of months ago a patient came in who had LOST his ability to walk 2 weeks after beginning to take it.

I think I will leave it on the shelf for now.

ALGIS, I thnk it is a common occidental view that traditional oriental medicine has a 'cure' for most anything, and is available at a local purveyer. Is there not a compounder available that is not regulated?

Another National Geographic TV myth I guess.
I hope you are well, and find this available soon.

PostPosted: Sat Apr 23, 2011 9:41 pm
by Algis
We do have local Gurus around each corners; but usually what they prescribe will not help in the best case and send you to the ER in the worst one...

National Geographic have possibly never been sick around here :P

PostPosted: Fri May 06, 2011 5:49 pm
by PointsNorth
My neuro prescribed the compounded 4-AP almost 3 weeks ago. Has improved walking speed and range a bit too. Ampyra not yet avail in Canada (the place it was apparently developed!). I find it to be irritating to the bowel as I have pre-existing IBD so that sucks. I'll continue to use as it helped get me to the coffee shop and back last weekend. Getting off the couch is also easier!!

best, PN

PostPosted: Sat May 07, 2011 8:41 am
by msmything
Congratulations on the success, I LOVE the days when it doesn't take a truck sized crowbar to get me off of the couch....