Thursday, December 24, 2009

I'm Number 1! I'm Number 1!

Everyone! Put on your big foam fingers and chant along with me! I'm number 1!

(No, she's not gone off her rocker... yet.)

I had my trial checkup last week on the 16th because waiting until the 22nd as planned would have meant I ran out of my drugs before I could see my supplier, er, trial coordinator.

This time I took my friend Karen (whose dearly departed husband I blogged about here) with me. She and I have been friends for at least 25 years now as she has pics to prove it even though my 11 year old swears that's a young boy in that pic. Can I help it I was more *svelte* back then? (ok, flat chested and narrow-hipped with a hairdo like David Cassidy) We just sort of went our separate ways about 15 years ago when everyday life wedged itself between us. Joe's death brought us back into each other's circle again.

So, she went with me on the long ride there and we had a ball. Amazing what stuff you carefully spend decades trying to forget -- and with the help of MS cog fog you successfully do -- until you meet up with someone who likes to say "remember when you _____(fill in the blank with some stupid thing you did)? That was funny as hell!" Glad I could amuse in an everlasting way like that. heh

Anyhow, the checkup was pretty much SOP with nothing new to learn. She had already told me of the unblinding of my TRANSFORMS phase III extension phase study and I know now that I have been on Fingolimod at .5mg for the entire duration. Nothing new to surprise me there.

Then I had my EDSS performed by the same neuro I had last time. She's a young lady who appeared to have swallowed a watermelon last time I saw her. She knew of my having been the last patient the eye doctor (for the study) saw before going into labor and so she had asked if I could rub some of my mojo on her hand because she, also, was due and ready to pop.

When I saw her this time, she's back to her skinny self and her baby is only 1 week younger than the 3 months it has been since we last met. My mojo once again worked and the legend grows exponentially.

She started doing all the follow-my-finger (not to be confused with pull-my-finger or that could be embarrassing) stuff and the exam commenced. Nothing remarkable to speak of.

The whole time I was explaining to Karen how I've always been amazed at the weird stuff they have me do and that I've always asked questions about what each test meant. Right about that time, the doctor was having me take the heel of my left foot and run it from knee to ankle down the shin of my right leg.

I said "I have no clue what she's learning from this tho." and Karen, not missing a beat, said "that's the test to see if you're sexy." My neuro burst out laughing.

She also had a good chuckle when she got to the question they always ask and I always (before) gave the same answer.... "Are you having any sexual dysfunction?" she asked.

"I don't know. I haven't had sex in 3 years." was always the answer before. This time, I had told Karen about that particular question/answer on the drive up and she gave me an idea for an alternative answer.

So, the neuro, staring at her clipboard with her pen poised to check the little box, asked me "Are you experiencing any sexual dysfunction?"

And, without missing a beat, I asked "Do you mean WITH someone?"

A good laugh was had by all.

Then came the 500 meter walk, otherwise known as "Walk this hall 25 times or until you drop dead." Karen was going to walk with me but she's got Oyster Foot and didn't feel up to it. (what's Oyster Foot? She got her foot all cut up years ago jumping from a boat into shallow water wearing only flip flops and got some bacteria in there that apparently won't ever go away and causes a constant pain. huh, I didn't know there was such a thing).

So I walked the hall myself and Karen stood at my exam room door doing cheers each time I passed by. On the final lap, she darted into the bathroom just across the hall from my exam room and nabbed a roll of toilet paper. Whirling off about 4 feet of paper, she jammed the end with the roll still attached into the file holder that was mounted on the wall beside my exam room and strung the rest like a finish line across the hall.

As I approached, I raised my hands in the air in victory and noticed she was humming the theme from Chariots of Fire as I broke through the paper finish line.

Giggling uncontrollably, I wadded up my "finish line" and jammed it into my totebag as a keepsake of the most rewarding 500 meter walk I have had in the trial. I told her I'd be reaching into my purse and whiping my nose or other unmentionables with my treasured finish line before I remembered what I saved it for.

As I was leaving, I asked the trial coordinator if I could know what my EDSS score was now that the trial was unblinded.

It was the best news yet! I'm a 1! (0 being normal and 10 being dead) I'm a 1!!!!

I'm Number 1! I'm number 1! And I owe it all to this pill. Amazing! Simply amazing!


  1. It never occurred to me I could ask what my scores were. I can't do the hopping part of the test, and I can only keep my balance with eyes closed for 2 seconds now. Hmm. No, I'd rather keep assuming I'm a one, too.

  2. You're always #1 to us, Jeri! Congrats on the continued great results, and we're praying that the drug company puts you, and all of the trial participants on free Fingolimod for life.


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