This Is MS Multiple Sclerosis Community: Knowledge & Support

I had a Busy day yesterday, bad day today:

Visited my neuro yesterday and did a number of simple errands. I thought I was holding up great but today I feel really bad (ill). Guess I over spent my energy budget.

Anyway they said “no tysabri for you!”. I guess the’re only giving it to people who have a lot of active inflammation. They said PML risk is 1 in 1000. I can’t help but wonder about how much stuff is going on in our ms bodies that they simply do not have the technology to measure.

She wants me to try 4AP? It might help fatigue (33% seem to benefit from it) Its not FDA approved but I guess I’ll try it.

http://www.southshoreneurologic.com/cli ... s-4ap.html

Let me know if anyones had success with it.

Oh well. Maybe a couple of days down will help.

Thanks All
Mick

I read the link, and did a search on this site (using google) and found that a user here (amelia), husband, has "been on it for years". Maybe she will respond, or if she doesnt, a PM. I would be interested to hear more, myself.

The last post at:
http://www.thisisms.com/modules.php?name=Forums&file=viewtopic&p=8596

I've taken 4AP off and on for the last 2 years. I've found its effects to be fairly subtle, but it does help increase strength in the limbs. The drug increases nerve conductivity by acting on potassium channels in the nuerons. It's supposed to be of greatest benefit to those who are heat sensitive...

A timed release version called Fampridine SR is currently in trials here in the States.

BTW, 4AP's industrial use is as an aviary poison, used to wipe out populations of nuisance birds.

Hey, jsut found this thread. Yes! Gary has taken 4AP for several years. He has quit taking it from time to time to see if it really is doing him some good. It is an amino compound that is suppose to do something with the nerve channels and postassium. I am not up on it like I should. But it does slightly improve Gary's eye sight and probably some of his mobility. He take 10 mg a day. Suppose to take 30mg per day. Sometimes he takes that noon dose and does okay. He said it doesn't make that much a difference. BUT don't take it in late afternoon or later. It will make you climb that wall at night and get no rest. It is relatively inexpensive. If you have a pharmacy that compounds in your town or immediate area, it is more beneficial. Just call around and ask if they compound. Don't over do the dose though. It is known to cause seizures in HIGH doses. Gary's neuro said that she has not seen any with the patients that are under her. Let me know if you have any other questions

I have a question amelia.

I read the info on this drug, and the way i see this as a possibility for myself, is to use as a "booster" for times when i think i may need it.

Do you have to take it regularily, or can it be used like an asprin for a headache? except before the headache.

You really need to take it regularly. Gary said it does leave your system. He should know since he is the one taking it. It is amino acids, so I would not sweat too much on bad effects to your body.

Thanks everyone for the replys. My neuro said that they have had difficulty finding pharmacys to "compound" it accurately enough. She said a dentist took too much of it and had a seizure. I was told to work up to the desired dose over two weeks time. She also wanted to make sure my fatigue was worse with heat (see previous post).

I'll post how it goes.

Thanks again everyone

Mick

To put your mind at ease, Gary has never had any trouble. He has had 3 different pharms to compound it. Just use one you or your DR can trust.

Hello! I'll weigh in here I have taken 4AP for many years and like it fairly well for increasing heat tolerance especially. I have never had much trouble with it and not siezures--and my sister has epileptic siezures.
It does make me very very tingly and I do not like that much so I do not take it every day. I personally do take it when I feel I need a boost just as you mentioned. ANd I agree to avoid taking it later to avoid sleep issues.
I think it is great stuff
Marie