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")
So I'm all happy. I'm just waiting doin' the Spartacus dance. (It's easy, you just stand up. Okay, that would be funny if any of you had actually seen Spartacus.)
In all sincerity, I hope things work out well for you, sweetie... {{{hugs}}}
Posted by: sue | October 26, 2007 at 12:47 PM
Isn't it ironic how sometimes it's gratifying to have people recognize that you're not exaggerating and that you're really not in great health? I'm excited for your having this new possibility and I genuinely hope that it goes great for you.
Best of luck, be sure and keep us updated on this.
Posted by: Katie | October 26, 2007 at 03:49 PM
Okay, let's see....my arms have turned blue and don't seem to be working right. Am I ill?
Why yes! I am.
Isn't it funny/ridiculous/hard-headed of us in general to think we're exaggerating when there's nothing wrong and denying when there is.
I had a doctor walk into the examining room once and say to me bluntly, "You are very, very ill" (I got better) and I said, "NO I'M NOT!"
Posted by: Becs | October 26, 2007 at 03:57 PM
Sue - I think I will be just fine, don't you?
Katie - And, you have my best wishes in your quest for health.
Becs - Here's what I found difficult. I had to get used to the idea that I go to the doctor so I can take care of myself. For a while I thought the doctor would be taking care of me. Same with nurses. Quite an adjustment.
Posted by: TheQueen | October 26, 2007 at 10:40 PM
I shall cross everything crossable for you. It's always amazed me that unlike insulin or antibiotics, which have an instant effect, MS meds are taken on faith that they will keep the disease from getting worse.
Thank you so much for being willing to help find new ways to treat MS.
Posted by: Jammies | October 27, 2007 at 07:00 AM
Jammies - The thing I like is that as long as you take any MS meds, you can tell yourself if you weren't taking it you would be so much worse. Kind of reverse/perverse pessimism.
Posted by: TheQueen | October 28, 2007 at 02:03 AM
I've always thought it was crazy that to be in a drug study, you have to be ill enough to be considered for the study, well enough to survive the study, and then not be taking anything for your symptoms currently.
It's a total catch-22, since, of course if you're ill enough, you're going to most likely be prescribed SOMETHING for the illness, right? But then you can't be taking anything if you want to be in the study! Aigh!
You are awesome for taking the leap of faith to test out something new. I hope it works. Here's to remission!
Posted by: styro | October 29, 2007 at 03:41 PM
styro - I thought the same thing - Its a Catch 22. Luckily, if you wait long enough, you run out of drugs, and then you're a perfect candidate. Actually, the FTY720 has another trial going on right now that lets you take Avonex along with the FTY720.
Posted by: TheQueen | October 30, 2007 at 12:09 AM