Friday, May 23, 2008

Visit 9 results are in...

Well, having finally gotten the day correct, I made it to my Visit 9 checkup. This was the shortest visit of the entire trial and only involved blood draw, vitals and the EDSS test.

The same guy who evaluated me last time 3 months ago got to have the honor of doing it again. He remembered not to stand in front of me when wacking my knee with the hammer thing. I can laugh at a joke, slap my knee, and kick an innocent bystander without even knowing I'm going to. My reflexes are that strong.

He poked me with the sharp-on-one-end/dull-on-the-other thingie and I messed up some of those answers but not many. My eyes did the little jerk while trying to track him moving his pen, and he said if I were stopped for driving under the influence I would have passed the heel to toe walking just fine.

Then I got to do the 500 meter walk. Pacing the hall 23 times. At one end, the receptionist was gone and the desk was empty with the lights dimmed. At the other end, several ladies were working at their desks and discussing what they would have for lunch. They were at the Even End. The Odd End was the empty one. I was in charge of remembering which was which and what number lap I was on. The doctor jumped out into the hallway to keep pace with me briefly to ask a couple questions that he'd forgotten to cover about if I had any strange sensations etc. He then asked me the lap I was on and for a brief moment I was horrified that I had completely drawn a blank. "Fourteen!!" I finally blurted out in sudden relief. "Sorry for screwing you up," he said.

After that I said my Even lap number at the wall out loud so maybe someone at the desk would recall my last number if I forgot it. Short term memory loss is a freaky thing. I don't like it one bit.

When I got done with the test I walked back to the exam room and collapsed in the chair, exhausted. He looked at the clock and said "thirteen minutes! Very nice!" Apparently I had outdone my best record, and I attribute it to the fact that I didn't end up limping halfway through like I have in the past. He noted that as well, without my bringing it up.

I asked if I could know my score and he said that he couldn't tell me due to the "blind" nature of the study. Things like knowing my EDSS could affect the way I felt about the trial and have a "placebo effect" or something. But I asked him, trying to keep a straight, serious face "you would let me know if I scored a 10, wouldn't you, Doc??"

He wasn't sure what to think until I burst out laughing and said "Cause I'd like to know if I were dead so I could go lay down now." He eased up.

He actually did say "when you get above the 5's from 6 to 10 is greater and greater disability and eventually confinement to bed and death. I can tell you that you are below a 6. And that's all I'm going to say."

I asked him if the fact that I was walking without a cane was a giveaway or something.

All in all it was a short and sweet. I got my new meds, the supply of shorter needles (because the ones that come with the Avonex are big honkers that look like I could go totally through my thigh from one side to the other if I actually dared to use them), and then I was on my way.

The traffic gods were with me and I only caught one red light on the entire trip up there, and 3 on the way back. For a trip that takes an hour and a half, that's not too bad.

Visit 10 is in 3 months and will require an all day stay. Then, after that visit, I go into the extension phase and have to do the 6 hour check-you-heart-rate-every-hour visit. Should be fun. I'm going to remember to bring a better movie to watch than Anchor Man. The movie was more torture than all the medical stuff.


  1. "I'll have what SHE'S having!" Maybe someday, anyway...

    I know this sounds rather corny and insincere, but I mean this in the best of ways: Thank you for taking the time to participate in this drug study. Without peeps like you, this drug might not come available for others (like me).

    You sound good...whatever THAT means!

    Linda D. in Seattle

  2. That accidental intrusion in your walk ... sure sounds like some of the test to me!

  3. Sounds like things are going really well for you, and I'm very happy to hear that. God bless!


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