Wednesday, February 24, 2010

FTY720 TRANSFORMS ext. phase checkup at 6 mo into 2nd year

Went for my trial checkup yesterday and had great results!

I didn't quite beat my best time on the timed 500 meter walk of 11 min 46 seconds, but I sure gave it the old college try. I was limping and stiff legged by lap 12 (out of the 25 laps of the hallway that somehow equal a distance of 500 meters).

I ACED that MSFC test where you have to listen to a recording of a guy spouting numbers every 3 seconds. Your job (if you choose to accept it) is to add the 2 numbers he said together, say the sum out loud, then throw away what you just said and concentrate on the last number the guy said so you can add it to the next one he says... it goes something like this.

Guy: 3
Guy: 7
Me: 10
Guy: 5
Me: 12
Guy: 5
Me: 10
Guy: 9
Me: 14

...and so on

It can get very hairy when Recording Guy starts saying things with double digit answers. All that math can wear a girl out! And I'm not good with adding 9 to anything although logically it should be as easy as adding 10...minus 1.

At one point, in the middle of the test, I faltered and couldn't come up with 9 + 6 = 15... and while my brain was farting, he spouted another number. I quickly said "15!" and then had to remember that he was still saying numbers... I was able to blast out 3 correct answers in one massive breath and get back on track.

It was close, but I scored 100%. :D

The clinical trial nurse shared with me that she once administered the test to another trial patient who is a school teacher and she failed so miserably she broke down in tears. I can really relate to this as the first time I took the test I didn't know the *trick*. Since I devised The Trick © I haven't failed yet.

It consists of simply saying the answer necessary and "throwing it away" only to repeat over and over (in my brain) the number the guy just said... so it would go something like this:

Guy: 4
Guy: 8
Me: 12 (8 8 8 8 8 8 8 8 )
Guy: 9
Me: 17 (9 9 9 9 9 9 9 9 )

And that's all there is to it. Since concocting The Trick © I now no longer fail this test, my hair is growing in thicker, I have made a fortune on Wall Street, and my boobs are 3 times their normal size.

You're more than welcome to use
The Trick © but be forewarned: your mileage may vary.

Other highlights of my visit included the animated discussion of the new name "Gilenia" which I stated sounded like LymphopENIA or some other such medical deficit. My clinical trial nurse said to her, it brought about the image of GardENIAs.

I told her that unless they put a flower on the box, I'm going to be sorely disappointed.

I had my PFT performed by a new guy who asked me if I could teach him how to administer the test and then, after a big ol "Ha Ha!" about that... I ended up having to teach him how to administer the test.

Well, at least the part with the flute that you have to measure peak inspiration and expiration. That thing that looks like something a pothead might get some bright ideas about how to turn into a bong... It is a clear plastic cylinder with a hole in the side, open on one end and closed on the other and hooked to some plastic tubing that in turn connects you to the machine that knows everything... every little breath you take, so to speak.

The point of the test is to breathe normally, and then take a big breath and cover the hole in the "flute" with your finger for a couple seconds during peak inhale or exhale, to create resistance, thus in turn, measuring your lung function.

We kept getting the timing off and I was getting my cardboard mouth guard soaking wet and soggy. That's when I told him "you're not doing it like the other guy does it."

He perked up hoping for an answer to how to get this old stupid dog to perform his new trick.

He said "how'd he do it?"

I said "He said 'Breathe nomal, finger over the hole, deep breath in, finger off.'"

It was like a light shone down upon him from the heavens as he had his eureka! moment. You'd have thought I just gave him the secret to the universe.

Then his eyes narrowed to little, untrusting slits.

"If you KNEW that, why didn't you just DO that?"

To which my reply was "I was the one having to breathe. You can't expect me to breathe AND think at the same time, can you?"

With the test completed he walked me to the exit door, thanking me for actually teaching him something about communicating his directions to patients better.

I told him he'd be getting my bill in the mail.

Then on to the eye exam. Well actually I got it all out of order since blood draw was first, PFT second, EDSS and patient questionnaire was next, and then eye exam last, but that's the power of being an Author. I can relay it any way I like. And since I have short term memory issues, I'm not worried so much about order of events as much as I am ecstatic that I can recall any of them.

So, where was I? Oh yeah, the eye exam. There is one important reason that I remember distinctly that this was the LAST test of the day. Because I had my eyes dilated so much I had to sit in the parking lot for an additional hour in order to allow them to adjust enough to attempt a 2 hour drive at dusk in rush hour 6 lane traffic.

The eye exam was not anything to speak of really. I was in and out and given a clean bill of eye health in a relatively short time (in waiting room years).

But the part I really remember was getting the drops. 3 kinds. One to numb me for the pressure test, some yellow stuff to see what, I don't know (but it really freaks you out when you wipe your eyes with a Kleenex and then look and see fluorescent yellow stuff on it. Eeek!) and then the drops to open up the pupils.

After I got the drops, within a minute I could feel them draining into my sinuses. And within another minute my head started to hurt. Just mildly at first, but snowballing into a big old headache of peculiar intensity.

I asked the doc when she was shining that bright light in my eyes if it was normal to get a headache from the drops.

She asked "do you have a history of migraines?"

To which I said "yes", but was thinking "well DUH! Read my file, would ya??"

"Oh, well those drops can precipitate a migraine so be sure to get some sunglasses on the way out."

So I left there looking like I just came out of a 3D movie that I really hated. I had the stupid glasses but all I could do was frown.

I made it home somehow. My vision looked a lot like this only you had to add in a squint factor since it was making my headache worse:

How I managed to get hom without a huge game of bumper cars is beyond me.

I still have the headache today, but luckily my vision has returned to normal.

All in all, it was a pretty good day. I liked all my results and all the people who work with the patients in the trial are great to be around and fun to talk to. Everyone has a good sense of humor. Of course, they have to if they are going to be dealing with the likes of me. :D

The lead investigator, when I told him I would be making him my regular neuro after the trial ends responded with a big smile and quipped:

"I'll be sure to call in sick that day."

1 comment:

  1. Too funny and I can so relate. I go next week for the "eye" exam and then for the full day of testing on April 1st. It will be my 18 month visit. My trick to the guy/me math thing is...I kind of hide my hands and the last number said I have it counted out on my!

    One thing, from one fingo head to another is I also have those cysts in my breasts and at times my breasts get so hard and swollen I can't stand to have anything touch them, very weird. Kind of like when your milk first comes in after having a baby. I think I know of two other women on fingo that have this issue too.

    Glad you are doing well. I still haven't been switched to the new protocol drug dosing yet. Of course we don't know if I'm on placebo or the real deal, but with my lymphocytes tanking and me picking up every bug known to man kind, the study nurse and I think I'm on the 1.25mg. Really looking forward to the .05mg and am hoping I'll notice a difference, if not, we'll know I was on the .05mg and my body doesn't like it very well.

    I am doing so much better since starting this drug though, I wouldn't stop taking it that's for sure. Thanks for all your postings, I truly enjoy them!


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