Not a "good" day...it started out with a way too early MRI at 7:15AM. Barely got out of bed early enough to change out of my pajamas, let alone greet my guardian angel, EB, who graciously gave me a ride in the rain to my appointment. Got shoved in the tube and came home with my copy of the films/disk for my own, personal voyeuristic pleasures (is it really voyeurism if you're looking at yourself?!?). My returning cab driver from Ethiopia was nice, though...and his cab was clean.
I took a peek at my noggin photos and noticed a few changes, but all in all, realized I DID still have some brain tissue left...so I emailed Dr. She Who Will Not Be Named to tell her "my findings"...unfortunately, what I believed I saw was NOT her assessment. She reported I had two new enhancing lesions (I think I really did see this, but denial is a powerful tool for the mind) and the TYSABRI nazi's have refused me infusion rights now because of my "anaphylactoid reaction" last week. Guess based on the MRI, the liquid gold may not really be working for me anyway.
Sooo...Dr. SWWNBN is consulting with my previous neurologist on "what to do"...I'm running out of options and my disease continues to progress itself right through the center of my brain. Here are her actual words, but I'm sure if she ever "discovered" I have been quoting her on "Cheese", I'll probably get sued!
You are a bad neurologist. You have two newly enhancing lesions not noted in 5/06. The Biogen folks said no infusion; I am actually talking your case over with your other neurologist to see if she has any brilliant ideas – she’s still cogitating so I feel better. Happy to write you a note although I don’t think you should go to work Thursday. So maybe Friday, preferably Mon. Where shall I send it?
The latter part of her message was in reference to my BEGGING for a note to return me to work on Thanksgiving Day as my coworkers will be working skeletal staffingand really would feel the impact of my absence...somehow, I STILL care about my job! The sad statement of fact is, I'm really not even sure I CAN physically return to work in two days...I still have vertigo (although not as bad as Sunday) and my left leg is very weak and unstable. But I feel I HAVE to have a goal right now...at least some kind of sense of control in my life since MS is stripping me of my dignity and trying to steal my joy. LOL
I had my second dose of IV Solumedrol today at 3:30PM...another good friend and neighbor carted me to and fro for that adventure as I can't drive right now. Well, I "could" drive...but I haven't lost ALL of my brain tissue and discernment to know I'd probably kill someone if I tried to drive! The infusion went fine, but I'm starting to feel the whirly psycho effects of the roids...you know, crying at AT&T commercials, slurred speech, wanting to eat not only the contents of my refrigerator but also the metal of the container itself, and agitation!
So, as you can tell, I really AM on the cusp of normal and I'm desperately trying to find my happy place...