Friday, July 14, 2006

Journal: Neuro visit, and my trajectory

This morning, I went to see my neurologist for a follow-up. It had been 5 months since my last visit, and during that interval I'd had the whole pain crisis with Lyrica, then no Lyrica, then back on Lyrica. I'd also felt like the fatigue thing had ratcheted up a couple clicks (especially in my trunk), despite taking a "relaxed attitude" towards my work this summer.

After a brief neuro examination (the foot-scratching, skin-poking, tip-toeing, etc.), he decided it might be useful to get a spinal MRI. I love getting new MRI films to look at, and I haven't had an MRI since I peed my pants in an MRI machine in Chicago in 2002, so I'm kinda looking forward to another round.

My neuro also had some interesting suggestions for the pain: if things get worse, maybe go back to the Cymbalta, because while it did cause me to sorta float away in a river of my own pee, it really was effective for the pain. We'd consult with the urologist about increasing or changing meds to deal with the Cymbalta flood effect. But that's a sort of Plan B to keep in the drawer until such time as I start going crazy about the pain again.

Lastly, we touched on switching from Rebif to one of the other disease modifiers. We talked briefly about trying Novantrone, the risks, the all-important timing question (you only get one shot at this, so is this the right time?), and I was pleased about the patient-centricity of the talk. Seems like we might be getting a bit closer to the time to try the Novantrone, and the decision about pulling the trigger is pretty much mine.

We talked about the gradual reductions in the maximum distance I can walk, and about the extent to which I'd be alarmed by further decreases. F'rinstance, what if in a year, my limit went from two or three football fields down to one. Would I be alarmed?

It's hard to get one's head around questions like that. While I'd sure be alarmed if something like that happened overnite, if my limitations continue to evolve slowly, I'm not sure it's time for Novantrone. The changes in function MS hath wrought in me are have been devastating, if you think about them all at once, as compared to one's pre-MS (twenty-year-old) body. But for me, MS has been a lobster-pot disease. The kettle has increased in temperature so gradually over 14 years that it's hard to imagine a point where I wouldn't be able to adapt to another tenth of a degree.

And every change is relative to the day before, not to the very beginning; it's impossible to try to think back to pre-MS. That seems like so long ago: I can't really remember what it was like to play soccer, to walk a mile in the hot sun, to make love with abandon. It would be like some kind of miracle just to go back to last month.

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Linda D. said...

Very poignant blog...I enjoy reading your perspectives. I, too, was recently faced with the Novantrone decision or "something else"...I've chosen something else because of similar worries about using up my last "Great White Hope", so to speak. LOL
Good luck with the MRI...I've never wet myself in the tube, but I have occasionally passed gas (TMI?!?).

Linda D. in Seattle

Kim said...

You know, it seems to me like you have a damn good doc. I'm not sure mine would have that same challenging conversation. And it's good to think about. I often think to my future but make the assumption it would be the worse case scenario. One forgets about that slow change inbetween. All the best to you on coming to a decision.