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4-ap doc referral

Posted: Tue Mar 31, 2009 7:30 pm
by shirini
this is my first try at a forum for info. Here I am in cowboy town, calgary, alberta , canada and can't find a cowboy doctor to prescribe 4-ap. I'm ppms and just havin a heck of a time getting my legs workin. Can anyone suggest a doctor I could contact with the intent of gettin a rx for 4-ap. it would have to be a telephone consult unless the doc lives in alberta.



:) [/quote]

Posted: Sun Apr 05, 2009 1:04 pm
by msmything
Hi Shirini, welcome...I was just crawling aroung this is MS looking for magical cure.
i was thinking asking for try the 4 ap as well. It's relatively cheap as these drugs go..
Sorry no one has been able to come up with a Doc for ya.
How about going to the compounding pharmacy that will put it together for you, and strike up a conversation with a technician or pharmacist.
Just ask them who in the area prescribes it..
It's not a privacy violation, you're not asking for pt info...

If you're a cowboy in cowboy land you know how to turn up the charm. If you're a cowgirl, you know even better.

All the best with your quest...

Posted: Wed Apr 08, 2009 6:00 am
by shirini
msmything

I've given that a try here in calgary as i know a compounding pharmacist. however, he said he has had no rx's for 4ap. i'm going to check out a few other pharmacies. thanks for your idea. i'll keep you informed if anything happens.

sometimes it seems that it is not what yu know; It's who yu know so I am approaching friends to see iup with any leads.

good fortune to yu on your journey

Posted: Wed Apr 08, 2009 8:43 am
by msmything
Ok the easy thing didn't work....what's next.

This site is an absolute goldmine of information..have you done a search by topic on 4ap and looking at old posts? there might be some clues there.

Why do you think 4ap may work for your legs? I too have read studies that are excitingly enticing, but everything with ms seems to end in a proverbial shrug of the shoulders....'let's give this a try'

I know that my neuro is a believer..at least he has used it on some of his pts, but I don't know what his trigger is to prescribe...is it a 'well this can't hurt" type of thing?

I can't see that anyone would do a phone consult/order 'cause the impression I get is that sometimes it works so well that seizure is the result...too much transmission of nerve impulses

why won't your doc prescribe it? have they have a bad experience? or are they not a believer in it?

Perhaps you could set up a dialogue between your doc and the people that have published the studies???long shot I know.. maybe you could be set up as a lab rat?

Is there a teaching hospital near you? Try the physical therapy department, the head of PT would perhaps want to get involved as the efficacy of 4ap has been 'proven' in studies by comparing physical data (the 25ft walk). as opposed to things like MRI.

I know the above paragraph does not represent what I'm trying to say, but I don't know how to fix it.....it sounds much smarter in my head LOL

I know how frustrating this must be. It doesn't take long to realize how relentless we have to be with regard to our own advocacy..don't give up..

I saw something on TV the other day about someone using a horse as a diabled person's service animal, it did the grocery store and everything...

4ap doc referral

Posted: Wed Apr 08, 2009 10:11 am
by shirini
anything you read on 4-ap these days indicate it is very helpful to most of those using it. as you may know , the same compund has been under clinical trials for 8 years or more under the name fampridine sr and a new drug approval was submitted on jan30 of this year. i found that the "cure"
forum on the scirutgers site has alot of info on 4-ap as well as the "patientslikeme" website.

doctors here really don't give prescriptions for drugs or chemicals that are not approved. You may find one that is a bit more open to these types of drugs but that is rare. I have found 2 neuros who have prescribed 4-ap but their waiting list is a minimum of 1 year

have a good day