Hi Alexana,
I am hopeful about this new med. Waiting to see if MS dr will prescribe it for me, last I heard she was not a big fan of it, no clue as to why - I will find out. I've read up on it and it all looks positive - so why not? My PT said it will not be prescribed by Drs until March 2010. Keeping my fingers crossed - looking forward to some help with the walking. Good luck to you and feel good. If I get it - I will keep u posted on how it goes. Annie

My VA doctor will give it to me as soon as iy is released. My income is now very little and the VA is taking care of me, I was honorable discharged, Great doctor and everyone so very nice. My for va insurance is very snall. Next Thursday will get a consut and a MRI from a nuro in the Sacranent6o hospital. As of right now I am thrilled with the VA. Lou

I am on the compound form of Ampyra. It helps my walk a lot---have gone without the med and it was not good so I know it works. My neuro said she would call me in a RX as soon as it is available. She thinks it is even going to work better than what I am taking. Annie why would your neuro be against it without even seeing the results from her own patients. Tell her you have to try it to see for yourself if it will help. Good luck.

Hey Punky

Good to hear this. My neuro says that when she can, she is very interested in having me try it. Glad to hear you are having good things happen. Nothing like a little hope on a winter day!

Do your own research before taking Ampyra!!!!!

Feds approve bird poison for MS sufferers

Did you remember to take your bird poison today?

That's not a figure of speech...the feds have actually approved bird poison as a treatment for multiple sclerosis patients. The "drug" in question is called Ampyra, and it contains 4-Aminopyridine. Look it up -- it's the same toxin used to keep birds away from crops and buildings.

As a poison, it works by attacking the birds' nervous system, giving the critters seizures and eventually causing them to drop dead out of the sky. Before the birds go belly up, they caw out a distress call, causing the whole flock to fly off.

And the feds say this poison is OK for people? Give me a break. The Humane Society wants this stuff banned from animal use, but do you think they've made a peep of protest about giving it to humans?

Check out the label for the bird poison -- phrases like "hazards to humans and animals" and "harmful if swallowed" leap out. I guess someone at the FDA didn't get the memo before they approved it for MS patients.

The supposed benefits of bird poison are laughable -- it's not an MS cure. It's not even a real treatment. It may help some patients walk a little bit faster -- between 10 and 30 percent faster.

That's it.

Hold your e-mails. If you've been slowed by disease or illness, I know how frustrating it is to have to inch along at a snail's pace. I know you'd give just about anything not to hear the exasperated sighs of someone unhappily forced to trudge behind you. I know you'd like to just be able to go for a walk in the park and not have to wonder if you can make it back home under your own power.

I know all that -- but bird poison isn't the way to help yourself, unless that park is overrun with crows.

Ampyra's side effects include MS relapse -- so not only will it NOT help your condition, it could make it even worse. It can also cause seizures, urinary infections, insomnia, dizziness, headaches, back pain, balance problems, constipation and sore throat.

That's not even the complete list.

If you're suffering from MS, I feel for you. I know you're looking for a cure, or at least something that can help -- but believe me, this isn't it.

Pointing out what's really for the birds,

William Campbell Douglass II, M.D.

M.D.---

---Caw caw---I'm still a squawking. Please do not rain on our parade. I am a proven "statistic" that this med does help.

http://douglassreport.com/

The article in reply #5 can be found on this website. So can many other things, including the entire line of products that the Doc sells and the book he is also more than happy to have you order.

To the poster of reply #5

The people on this board actually really do check facts, if you visited often you might know that. You might also know that the statements made in the article about Amprya beig used as a bird poison, well, the truth is that Amprya is a new formulation of an old drug that was taken off the market and made changes before being tested in the current form.

If you suffered from MS, you would not make light of increased walking ability. The tests have shown significant reson to be hopeful, something which is a good thing.

Your assumption that we are some kind of lemmings who just follow what we hear or we are told is rather insulting.

Oh, and reply #5, I realize that you did not write the article, but by posting it and promoting these ideas, you are forwarding the same attitude. JMO

I'm having a flare up after 3 years and was expecting IV Steroids-my Neurologist said let's try the new drug before using the steroids. I was hopeful but I'm afraid. Dr. was concerned about steroid use 'cuz I'm on Tysabri. Anyone on Tysabri????

I have been on it for about year an half , my doc has a compound parm that makes it, i find it to be very HELPFUL i am from ny , i pay about 171. for a 3 month suppply. i understand famprindine will cost alot now that it has been approved by the fda. if you have good coverage it should not be a problem

That post from JJFlash was exactly right ....it is a bird poison designed to make pigeons seize to death. It used to be used in a compounded form, with risk. And it was cheap. Some scientists/pharma saw a way to market this by changing the original formula into an extended release version to reduce seizure risk. It was very inexpensive in compounded form and is now very expensive in this form.

I have read posts from people who developed severe pain and/or seizures on this drug. Our moderator is one.

Almost all meds for MS are toxic in some way. Don't scoff at someone who is trained and knows what he is talking about. Do your own research and be informed on the risk you are taking. Big pharma is laughing all the way to the bank.

Melanie

Ok first I was reading through the posts and I need to make a few comments.

First you SHOULD research the meds you are on or looking to take as you are your best health advocate.

Second Ampyra is a pharmacy grade version of 4-AP which is a potassium blocker. Since nerve conduction requires potassium (sodium and calcium) this is how the drug works. I believe I posted ...maybe a year ago, that at HIGH levels it is used as bird poison because your heart is a muscle too. If you stop all nerve innervation then your heart is going to stop. I believe I posted this so that people would not think that if one dose helped that upping the dose without doc permission would help more. When in fact, it could be deadly. So only use it as prescribed. I also said that Coumadin (warfarin) is an anticoagulant that at HIGH doses is used as rat poison that makes you bleed out. So again only use it as it is prescribed which is at low doses for those at risk for stroke. At this lower therapeutic dose it saves many lives every year.

----
OK onto my thoughts on 4-AP and the pharmacy grade Ampyra.
I advocated 4-AP for my hubby to the second neuro we had in IL. After 2 other drugs did not work for him he tried 4-AP which helped a little but not much. So he stopped using it. He had his first bad relapse since Oct 2005 (yr of dx) this summer and his walking got bad. I didn't think much of Ampyra when new MI neuro suggested since 4-AP (compounded can vary by location so maybe others had a better mix) didn't work much. However, since his walking was so bad we thought what the hang. It worked well and he definitely wants to stay on it.

Good luck in your research and working with your doc to see if it might be something you want to try.
EP

PS I am not sure how you would get it in the UK as I don't think they approved the drug over there. If you find it is something you want to try, can you get it mail order from another country?

I was on Ampyra for about a month but seemed to get more side effects the longer I was on it. Started with headaches, then dry mouth, then diarrhea, then tingling and numbness in my hands, and then blurry vision. It also did not seem to be making that much difference in my walking, but it was difficult for me to tell because I was also having a relapse at the time. The relapse started before I began taking ampyra so I don't think the ampyra was a contributing factor there. Anyway, after talking with my doctor we decided the side effects probably weren't worth the benefit I was getting so she told me that I could stop and see if it was really helping. I don't thing it was helping all that much in my case and I felt much worse on it with all the side effects. However, if my walking gets much worse again I might give it another try. I think the problem might be that everyone gets the same dose regardless of size, weight, etc.

I take Ampyra. I didn't notice much difference, but I'd also heard anecdotally that it could take up to nine months to build up in your body.

After being on it for six months, I started taking 600mg magnesium/day. Wow! There was a MARKED improvement in my walking after only three days!

Neuro doesn't know if it's just the magnesium or a combination of both, so he told me to stay on both. My copay just increased again so I may give it a rest and see if my walking ability declines, in which case I'd go back on it.

Oh I wanted to add, my hubby started to have chattering teeth and a little bit the shakes after being on it a few months. So instead of taking 1 tablet in the morning and 1 at night, he started taking 1/2 tablet in the morning and 1/2 at night (cut the dose in half). The side effects went away but he still is getting the walking benefits out of it.