Friday, December 17, 2010

Week 96 Ocrelizumab study visit

So, yesterday drove up to Phx to see my neuroimmunologist for week 96 of the clinical trial I'm in. Hard to believe it's been so long! And I have to say, I would really recommend the next clinical trial of it, a Phase III which I may not be able to be in (long story). It's been a truly amazing drug, and really very helpful to me and others, apparently and anecdotally. Zip new lesions in over a year and a half. The new study is up at, but they're not recruiting just yet.

So that's all the good news, and physically I seem to be okay, but my EDSS score went to an all-time high of 2 (I know, not a lot, but still) because my "mentation" impact was higher than usual. Normally I run a 1, but this fuzziness spoken of in my last post hit it enough so that rather than a "1b" or 1.5, my score was a 2. My lovely study coordinator was nervous, but my neuro wasn't at all. Given I'd just finished teaching for the year, a year I was completely overloaded with work, he thought it was not at all odd to find cognitive issues arising.

I asked and he said he would set up neuropsychological testing at the same hospital, and he said "It would be good for you to see. They're meant for an average, but I don't think yo're all that average. You will be surprised." How nice! :p. So, maybe it will make me feel all better to note that my cognitive functions aren't all melting ala the witch/water combo in the Wizard of Oz.

Oh well! I still feel okay, but annoyed by the bits of spelling I seem to be missing. I do have Dragon Naturally Speaking, but with luck I'll just be able to not worry so much abotu all that for a couple of months. What a relief!

Wednesday, December 15, 2010

the "sqeauky" wheel.."sqaueky".. SQUEAKY!

As some may have figured out, I profess English and have since I can remember considered myself an excellent speller. For real.

So yesterday, why did it take me half a minute to spell "squeaky"? Yeah, 3 vowels in a row, but STILL. Maybe because I was using a cell-phone keyboard? But then I also struggled with another word yesterday, something beginning with a "M". Hmm.

Right about the time I was going to go the hospital to eventually have surgery and later be diagnosed with MS, one of the great frustrations, more so than the cane use, was a feeling I'd lost some words. Not misplaced, not stuttering, but really simply just lost some words I'd known my whole life. Given I've been reading since about 3 and writing just about as long, this was disturbing. Noticeable to everyone? Of course not. With half my brain cells gone I'd probably still have a bigger vocabulary than many. VAST. ENORMOUS. Nay, MONSTROUS. I don't even go "uhh" anymore in speech because I thought a long time back it sounded stupid. So I just pause, and normally not for more than a half-second, until I find the word.

I never lost the ability to comprehend words I knew, but my typing was getting poor and I was struggling a little more for everyday words. At the time, it was the close of the school year in December, and I was both falling down (massive lesions on the motor cortices on both sides on my brain) and stumbling over words. I know I looked bad physically, but I felt much worse mentally-- I was not at all certain what had befallen my brain. I mean, come on-- I've not only got a degree or three, but I REALLY KNOW WORDS!

At the hospital in Phoenix, I graded my students' work and turned in grades. I don't remember what I read or how the papers were. Of course, I was kinda focused on my own health at the time, though time itself was a wee fuzzy. It's still hard to believe I did any work there.

After I got back, and read through all my doctor's reports, one stood out. It was from my neurosurgeon, a very nice, brilliant man, who noted "She is actually quite fluent, but it is obvious she is frustrated by [losing words]". Spot on! My best friends would probably have picked up on it, but neither hubby of 3 years nor colleagues really knew enough about me to see subtle signs.

On and off I've had some spelling issues when typing, but not all that noticeable. I do get nervous and angsty when my brain seems to be tripping over itself when trying to locate the right word. I wonder sometimes if words are individually stored or if synapses have to make multiple connections from which words derive. I would imagine the latter, but still-- even if they were individually stored I could have all the words in English in my head and still have a LOT of space for other brain needs.

I don't think I've had a bad relapse, but my paroxysmal (spelled that in one go!) symptoms pop up with about monthly frequency. I'm not sure how much my motor cortex was damaged, nor if I struggle with spelling because my hands have been affected and usually the problem is with written English (or typed) and the motor and mental skills are being jumbled.

But it's definitely scary, possibly the most unnerving of the MS issues. I don't give a rat's hiney about ending up in a wheelchair, though I imagine that will bring issues of its own. I do care about semi-perceptible brain slowing, the kind of thing that won't descend into dementia but will into a vague, "hmm... I know this... I KNOW this" feeling of being just on the wrong side of the right word.

Hmmm. These are the things that try my soul, and certainly (hadda work at that word 2x!) my patience. Unfortunately, few get it. That's the sucky, all-alone part feeling of MS, which I know some of my colleagues in the MS-universe hear me on.

May all your "squeaky" wheels be greased!