Thursday, June 11, 2009

On a scale from 1 to 10, or, the EDSS

Today was visit number 17. It was to be a short checkup (after the long, gas-guzzling drive there)to include blood draw, vitals, and the Expanded Disability Status Scale test.

This test, as I've blogged about before is performed by a neurologist and it's the neurological equivalent of the 20 Questions game, but instead of "Is it bigger than a bread box?" you get questions like "Do you have hesitancy/urgency when urinating?". I always want to ask them something equally embarrassing in return and see how they like it...

"Do you have to sit like a girly-man when you pee?"

Anyhow, today's test was performed by a doctor whom I have seen before for the same test. He recalled my answer the last time he asked the standard question "Do you experience any sexual dysfunction?" and my reply was "Does not having any sex count as a dysfunction? No? Then I don't know if I'm sexually dysfunctional."

He had a good laugh over that (again) today, with the young guy accompanying him (remember it's a teaching hospital and I was the live specimen today).

The test went as it usually does, with notes being made that my left side was more outta wack (that's a medical term) than my right, which seemed in perfect wack.

At the end of the test I got 3 pleasant surprises.

1) When I asked what, theoretically, would happen if I couldn't finish the 500 meter walk, the doctor replied "What? Are you tired today and don't feel like it? Because it won't count toward your score if you don't want to walk."

So naturally, being of sound mind, I stated that I didn't feel like it. Thinking back now, that could have been a test of my mental acuity in that nobody in their RIGHT MIND would choose walking a long-ass hall 25 times over opting to take a pass. Therefore, I am in my right mind today. whew!

And the other pleasant surprises, you ask?

2) I got to listen to the neuro who performed the test explain to his student how to grade an EDSS test.... and I HEARD MY SCORE!! I have never before had an EDSS test and known what the results were because of all the hush-hush "we can't let #8 know anything about her trial stuff" kinda treatment.

I scored a 1.5. on a test where 0 is perfect and 10 is dead. The only thing they ever told me before was that I was closer to 0 than 10. Well, duh. I could have figured that out on my own.

and last but not least, the most pleasant of all surprises....

3) My extension phase is NOT one year as I could have SWORN I was told to begin with... it's 2 years! YIPPEE!! Guaranteed drugs for at least another year and 3 months. Whew. A Fingohead's worst nightmare -- to be denied her FTY720 -- avoided for another 365 days, or 12 months or 52 weeks but who's counting?

The rest of the visit was just getting my new pills and trying to work out the details of Novartis being cajoled into paying for my recent GYN visit due to an HSV outbreak and the need to be seen as my trial coordinator insisted. Seems if they insist, they should pay, right??

Well, the GYN visit collapsed from being about HSV into a scathing lectured (once the doc reviewed the notes from my last visit) about how I never got a follow up ultrasound regarding that cyst on my ovary.

He launched into a tirade about how there are no perfect tests for ovarian cancer and that I needed to stay on top of this. When he said "three months" it did not mean "or in a year, whichever you prefer".

So now here I am waiting to see if the drug company will pay for a follow up ultrasound of my ovary, which, if I self-paid would cost me $231 (might as well add a string of "0's" after that for either way I can't afford it).

I don't have the desire or mental strength to spend time worrying about the possibility that I have ovarian cancer. I just can muster the horror. Does that mean I'm slacking as a hypochondriac? No, whew, I was worried there for a minute, but any hypochondriac that can actually worry that they are somehow not performing correctly as said hypochondriac, well, they have nothing to worry about. How ironic.

I'll try to blog more when I have something profound to say. I've been waiting for profound thoughts and that's why it's been so quiet here. Maybe I should just stick to posting profound thoughts on Twitter since it is less strain on the brain to come up with profoundness in 140 characters or less.

Hope ya'll are staying relapse free or able to fake your way through. It's too beautiful out today... as my father would say "I think I'll leave it out."

4 comments:

BRAINCHEESE said...

Been there, had that ovarian scare just recently...WTF?!? Are ovarian cysts CATCHING now? Via computer screens???

Opting not to walk the 500 seems sound...unless there was a doughnut waiting at the end. Then your decision wasn't smart at ALL to not do it!

pUNKrOCKfairy said...

I've never had to do the 500 meter walk in any of my EDSS's. Sometimes I'd want to refuse too but right now I'd love the chance to show off!

I wonder how different the protocols are within the FTY720 trials are? Makes you wonder how they go about crunching the numbers if everyone's doing it a little different...

TickledPink said...

I have often wondered the same thing about how accurate the data can be if everyone's doing something different. Heck, even from one EDSS to another there are differences in what/how they test if performed by different neuros.

Unfortunately, it seems like every time I get tested, the guy ends up telling me, "this will be my last time since I'm leaving because ____" (fill in the blank).

I have outlasted nearly everyone involved in the trial with me, including the lead investigator, my trial coordinator, and many of the people who test me.

Only constants have been my favorite nurse (Loreen -- who, come to think of it, was NOT there on this last visit), and my eye doc.

How they gain any scientific data from all the messed up variables is beyond me.

Vicki said...

Glad to hear your right side is in wack. I am also pleased when I hear I am up on the technical terms.

Here's more good news for your readers -- the test was extended, and you are pleased it is longer than you first thought. That says to us that you feel the pills are working!

It is also good that your EDSS is 1.7. You are just full of good news!