That's what I said.
What are we considering?
As I waited...and waited, for the doc to enter exam room 3, I began reading a free booklet called Living With MS. Just before I was greeted by Neuro-Man, I was reading a passage about drugs for symptoms of MS fatigue and symptoms, especially brought about by heat. This of course caught my eye because I live in South Florida. Heat is one of my major obstacles, and the drug I used previously for fatigue was not tolerated well and had a new FDA warning on it. The drug that was being discussed was Aminopyridine or 4-AP.
I had never heard of it. That surprised me considering I thought I had voraciously read everything about MS in the first 2 years of my diagnosis, and have been practically OCD about checking all that Google reader has alerted me to.
So, after exchanging small talk about nothing new in my head, cervical spine or thoracic, and describing my symptoms as SOS, I asked about this 4-Whatever, that I had the little book dog-eared to.
"Oh.." he said, "I have a (note the singular) patient on that and she does well with it. Want to try it?", as he wrote on his prescription pad.
"How is it different than Provigil, what is it and how does it work?"
"I don't know."
"You need to get it from a compounding pharmacy." was all he said as he handed me the script.
It kinda reminded me of a time (decades ago), when someone (not in a white coat and usually at a concert) said, "here try this."
"What is it? What does it do?"
"I got it from so-and-so, she really digs it!"
I came home and excitedly Googled this new little pill.
I found :
4-aminopyridine (also known as 4-AP and Fampridine) is a drug that blocks the potassium channels in neurons. This effectively improves the transmission of nerve impulses down damaged axons. It does not replace damaged myelin but users of 4-aminopyridine report dramatic improvement in a number of symptoms especially paraesthesia. It should be born in mind that this is an experimental drug and the side-effects are uncertain. Dosages should be carefully regulated as potassium is a chemical that is used extensively in other parts of the body including heart functions.
Agriculturally, 4-AP is used as an extremely effective bird poison sold under the brand name Avitrol. It is highly toxic to all mammals including humans if dosages are exceeded, and, as an experimental drug, recommended dose data is unavailable.
A slow release formulation of 4-aminopyridine is supplied by the Irish drug company, Elan Corporation, and is currently being tested by Acorda in two phase II trials in the US. It is currently awaiting authorisation by the US Federal Drug Agency (FDA).
I also found that Lisa, at Brass and Ivory had recently written about it and had many resources listed. (as usual, Great Job Lisa! )
So...what does the Bubbie make of all this? Hmmm, a bird poison? Not FDA approved BUT I can get it from a compounding pharmacist? How much do you take, and when? What's the difference between what I can get from the druggist and what is in clinical trials and not yet approved?
Potassium? Isn't that essential to important things, like...my HEART? Side effects? Will birds treat me like Tippi Hedren? ( Was that her in THE BIRDS?...MS brain fog)
Way too much to think about now. I'm going on another trip to see my kids next week. I'll return to my investigation next month.
Meanwhile, feel free to comment on whatever it is you know on the subject, as I am too confused to ponder and too old to say, "Cool! OK!"