Wednesday, September 8, 2010

Checkup 22 TRANSFORMS FTY720, Fingolimod, Gilenia Clinical Trial

On the 20th of August I had reached the big 3 year milestone in this clinical trial and had a nagging thought that the clinical trial director had told me when my anniversary appointment would be, but I didn't worry too much because she ALWAYS calls the week before to make certain I didn't forget (which I always do).

This time was the same as usual -- on my part -- and I completely forgot. It was not the same as usual on her part as she, too, forgot. She called me yesterday as I was about to take my pill somewhere near 9am. She told me she forgot to call and all my tests were scheduled for that day. It's a 2 hour drive to get there and I hadn't showered yet, so we compromised and she rescheduled some stuff. I got her to push the dreaded MRI back 2 weeks and the skin exam will be the same day.

Whew. I CANNOT just be told "you're having an MRI now," without a sufficient period of pre-MRI worry time. I have to psych myself up for it like Rocky Balboa drinking his pitcher full of raw eggs and stuff. Only my pitcher needs to be full of Xanax.

So I get my shower and call my friend Karen to ride up with me. She drops everything and goes. I know I'll need her for the ride back if the 4:30pm eye exam goes anything like last time .

We get there and I go right in. I have my vitals taken, blood drawn, EKG and peg test and fast paced walking. Then I go across the street to the hospital for my PFT. Everywhere I go everyone is abuzz about how the med is nearing approval.

I ace all my tests and come back to the Research Department for my EDSS and the Numbers Guy. That's the one where the recorded guy says a number every 3 seconds and you have to add the first two, say the result, then forget what you said, remember the last number he said, and add it to the new number he said. Sound confusing? Try doing it.

Evil Recording guy: 5 ...... 3
Me: 8
Evil Recording guy: 7
Me: 10
and so on...
I did perfect until halfway through when I became acutely self-conscious with Karen in the room. I was wondering if she was following along and heard me hesitate at the dreaded 9's. I don't know why I get hung up adding 9 to a number but I do and always before I just got a little slower;  I didn't go dead in the water with Evil Recording guy spouting off numbers while I drooled.

Yesterday I missed 3. Out of 60 numbers, that's not too bad.

Then I had my EDSS test and I got to skip walking the hall since I had walked across the street to the hospital and back and that was far enough according to the people in charge of testing me. They used a high tech way of measuring my ability. They asked Karen if I could keep up with her. Hey, I'm not complaining. Any time I get out of the "25 Lap Hall Walking Marathon" for MS I'm happy.

Then it was on to the eye exam which I had been stressing over since my incredible headache and starry-eyed vision the last time I got dilated. After a lengthy conversation with the eye doctor, she reassured me that I would be fine and we proceeded with the drops.

After the eye appointment I had to go back to Research and see the head neuro overseeing the trial at this location. He wacked me with his rubber triangle hammer in a few places, told me how I looked better and better every time I saw him and then started talking about the Exciting News!

With that teaser I'll just leave you hanging for a brief time while I tend to my duties long enough to carve out another slot of time in which I can sit and type the juicy details. Stay tuned!

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