I got a phone message from the neurologist last night.
"Mrs. S______, I'd like to discuss the result of your interferon neutralizing antibody test with you. I'll call back Saturday or Monday."
On the one hand, we all know this is not the right message. The right message is "I've reviewed your test and everything looks fine."
The wrong message comes from the office staff, and is "The doctor would like you to come in so he can discuss your test results with you."
Not sure where this falls. It's pretty late Saturday. I get the feeling the office staff will be setting up an appointment with me Monday. And really, all it would mean is a change in medication.
(Brief MS lesson: the current thinking is ones immune system is out of balance. Plenty of "find and kill the bacteria" cells, never enough "just chill out, dude, bugs are dead, stand down" cells. Hyperactive kill cells muscle their way out of the bloodstream into the brain and start fragging a specific brain cell called myelin. Pansy-ass chill cells weakly call out "Game over, dude, game over!" from the bloodstream, but are ignored.)
I have three remaining injection options, all with their good points:
One strategy doctors use to fight MS is to literally have their patients inject themselves with more of the chill cells, or inteferon. There is still one brand of inteferon I haven't tried, Rebif, which is actually a triple dose of the inteferon I took three years ago.
Copaxane, which is just freaky. I love the way the Copaxane works. If I understand it correctly, you inject decoy myelin cells directly into your bloodstream. That way, the kill cells can ambush the fake myelin without having to leave the bloodstream and cross over into your brain. "Fight them here so we don't have to fight them there!" the kill cells shout. They lazily pick off the decoys and don't invade the brain.
Tysabri, which Teflon-coats the walls of the bloodstream so the kill cells can't break through into the brain. They just slide around and bounce off the walls on the veins and arteries. Bwhwhwwhahahaha! Hilarious!
Yeah, before you ask, they all cost as much as the stuff I'm on now. I'm not going to look up which are covered by my insurance and which aren't, because there's a chance the doctor will call Monday and say "Hmmm...yeah, your tests look good. Have a nice day."
Yeah, if he's going to call about it, as opposed to asking you to call in, it's probably just a med adjustment. Sure woulda been nice if he'd SAID that, though, so you didn't have to worry about it for two days....
Posted by: ~~Silk | June 24, 2007 at 12:47 AM
Damn HIPAA and the cryptic messages that have resulted. I like the sound of the decoy medicine. I'd like to think the bad guys are lazy and easily distracted by shiny objects.
Posted by: Caroline | June 24, 2007 at 07:50 PM
~~Silk - Well, actually, I guess he could be calling to say "Mayo" lost the results. Or maybe my blood got mixed up with Terri Garr's.
Caroline - the only thing about Copaxone (the decoy meds) is they take six months to dupe the bad guys.
Posted by: TheQueen | June 24, 2007 at 11:31 PM
It's interesting to hear all this. We have a friend with MS but he doesn't talk about it much. Thanks for the lesson...
Posted by: sue | June 27, 2007 at 01:47 PM
sue - Yeah, most people are like that. My family always felt that illness is a natural part of life, but I know sometimes people feel it's TMI to talk about it. (I bet you haven't seen this guys naked toes, either.)
Posted by: TheQueen | June 27, 2007 at 11:07 PM