So I was a little disgusted to hear I have been too well to be in the clinical trial for FTY720. In fact, I had a neuro appointment last week and I strongly considered faking a limp, just to spite them. I thought this in particular last week when I had this IM conversation with Caroline:
Me: su does hwe want us to tesat the product befoire or after>
Caroline: Before, I would imagine.
Me: welkl hbouw does he expct us to test it without a sigbed contratc?
Caroline: Get. An. MRI.
Then, Dr. S_________, the doctor actually running the trial, wanted to see me this week. As if I was still a candidate. Dr. S_________ had seen my mother earlier for her spells. That's why I walked in today and said, "Mom said to tell you 'Dalmatian, soccer ball, menu.'" (These were the three words he'd used six months ago to test her memory.) He laughed.
He later tried to test my memory.He said, "I want you to remember three words. I'll ask you later what they are. Dalmatian --"
"Soccer ball, menu!" I finished. Evidently he always uses the same three words. (So, Mom, if you see him again tell him I say "Tiger, boat, violin.")
He also corrected me when I described my brain as looking like Swiss Cheese. "No, it's more like a dalmatian. With the spots."
"Yeah," I said, "When I got my drug list from my GP's file I noticed the medical correspondence kept describing my lesions as 'tiny.'"
"Oh, no. I just saw your MRI. Your lesions are BIG."
Wow, I thought, finally a doctor who is generous with information. Dr. W______ was better than Dr. B________, but this guy doesn't hold back at all!
"Well," he continued, "You do have one tiny pinprick lesion. In your brain stem."
Okay - brain stem? Really? Hold up a moment --
He went on, "But your brain is just right for what we need. CLASSIC MS brain. Textbook! And you're lucky, you don't have any black holes, some people have black holes. You just have two. In spots that are pretty much unused, really..."
So... my dancing skills quadrant? The Portuguese-speaking lobe? Do I still want to hear more? He'd tell me everything if I asked. Let's just not ask right now.
So, at any rate, it would seem the loss of arm function I felt after my arms turned blue was most likely a flare-up: therefore I am sick enough. Now we have to spend a month determining if I am healthy enough. I need to get physicals and work ups from cardiologists to ophthalmologists. Then, if I don't have anything but the MS wrong with me, I get to take either a full dose pill, a low dose pill, or a placebo.
Oh! And I found out the secret to getting into a trial: refuse other drugs if offered. It's a trick question! I gave the right answer. ("But - whine - then I couldn't be in a trial... pout")