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!

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