Wednesday, December 08, 2004

MRI tomorrow

Okay, it's set: I will have an MRI tomorrow at 11:45 AM. You may recall that I have claustrophobia and I don't like being inside that tubular coffin. But I was able to handle it on two occasions previously. One of the doctors who works in the MRI facility requested this follow-up MRI so that she could write a research paper about my case. The FLAIR signal being so bright was what interested her. She's the one who first suggested to my neurologist that I might have ALS. So I guess I am returning the favor. But I am also interested to see what is going on inside my brain now. Is that signal still bright? Is there a giant hole in my brain? Etc., etc.

She requested this MRI back in June. But I have had a wracking cough for so long that I could never schedule the MRI. You're not supposed to jiggle inside that machine. And besides, I wouldn't want to go in anyway, unless I was feeling tops. I feel pretty good right now.

This is also part of my one-year diagnosis festival. I am getting blood work done again, getting the MRI, and will go back to the specialty clinic that confirmed my diagnosis back on Jan. 28, for what, in my mind, will be a one-year checkup. However, the actual visit will be Valentines Day, Feb. 14.

When the doctor confirmed my diagnosis, I was of course asking him about prognosis, and he said

Then the next most rosy scenario is that this goes very slowly, and a year from now we're sitting looking at each other and the differences are very modest. Little more trouble with the hand, little more trouble with the leg. A year later we're getting together, and it's still only in the left arm and leg and we're still looking at a only a little but of worsening. And I have seen that. So, that's -- worsening over time -- but very, very slowly. So that would be second-best rosy scenario.

Basically, I am looking forward to sitting across from someone at that clinic and being told that I am only having "a little more trouble" with the hand and leg. Actually, it may sound silly, but I want to sit in the exact part of the exam room that I sat in last time while I got the diagnosis confirmation. The image of "we're sitting looking at each other and the differences are very modest" needs to be fulfilled. So I'll be sitting, probably talking to a doctor or nurse, but not the same one, and there will be a moment when I say to myself that this is the moment of sitting!

And then I'll get up. And walk. That is no small blessing for someone with ALS. The other week, I walked to the store, and it was sunny and brisk, and little white clouds curled in the sky, and I looked up, and I was just so thankful for every step. I'm walking! I'm walking!
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