Wednesday, March 4, 2009

Screen name: LabRat

It's been a while and I am sorry to have neglected you. I got distracted by Facebook after my mother dragooned me into joining, but that's no excuse. Also, I've been miserable at work and with the economy and just didn't feel it would help to indulge my misery in "print." Mostly, I've been busy getting all the screening exams for the Fingolimod trial, which is taking place about an hour south of me in Vero Beach, FL. I just decided to wait until I had completed the screening so I could unload all the details here at one time.

So far, so good. I've now had blood and urine labs, an extensive eye and optic nerve exam, a pulmonary function test, a high-resolution CT of the chest, an MRI of the brain, a skin survey by a dermatologist, a normal physical, a neurological assessment, timed walking trials, timed peg board trials, a memory test. Is that everything? Oh no, I missed the worst one. I also had an Echocardiogram, which is basically an ultrasound of your heart. All of the tests/exams were in different places, all about an hour from home. Inconvenient at least, but none took very long or were very difficult. Here's a rundown of how they went:

1> I had the initial meeting with the study directors who are very nice and accomodating. They asked about a gazillion questions, took blood and pee, and had me fill out a ream of paperwork. They have been very helpful setting up the appointments for all the other tests and rearranging things around my ridiclously complicated schedule. The neuro who's name is on the study did a normal physical and I was off.

2> The Hi-Res CT of my chest was uneventful, and quick. They even let me take a CD of the images with me although I'm thinking they probably weren't supposed to. They don't have any idea that I look at CTs all day, and probably assumed that a) I wouldn't know how to load the disc, or b) I wouldn't have any idea what I was looking at. Wrong on both counts, and I now know that despite ten years of smoking, I've got perfectly healthy lungs (and gorgeous clavicles if I do say so!).

3> The eye exam was the same day as the CT and mostly as per usual, except they did a test that creates something like a topographical representation of the optic nerves. The doctor was nice (and kinda cute!) and explained everything thouroughly, saying that there is thus far, no damage to my optic nerves. He said he'll be examining me repeatedly throughout the study. Then I had to do the hour-long drive home at 4:30 pm with my eyes dilated. Awesome.

4> The MRI was also typical. Quicker than usual, which I assume is because they do only the protocols specifically called for by the study. I'm guessing that will be repeated throughout the 2 years of the study too.

5> The pulmonary function test was done at a hospital so there were the usual hassles of parking and a long registration process that comes with going to any hospital. The respiratory therapist that adminitstered the test was friendly and funny, and apparently I can look forward to seeing him again and again. He said he's the only one who does the PFTs for the study. He also responded well to the whole "I-have-MS-and-here's-how-I-found-out" story. He said, "Alright, well, that's lame dude." This IS Florida and he probably actually is a surfer dude.

6> The skin survey was just what it sounds like. Except that I had had to drive a long way before stripping to my skivvies to get ogled by strangers. The nurse made comments on my tattoos, but not the dermatologist (much to professional, I'm sure). He started at my scalp and worked his way all the way down to the soles of my tattooed feet. He dismissed me with the comments, "The nurse'll give you some info about malignant melanoma," and "Nothing to cut on today."

7> The neuro assessment was pretty much the same as the usual one in my personal neuro's office, and was administered by a different MD than the one who's in charge of the study. She said it was to establish a baseline and will be repeated once more before I start on the drug. I did two rounds of tests the same day that included being timed while walking a prescribed distance, placing 9 pegs in a board and taking them out with each hand, and a memory test. These tests all have to be redone before starting the drug.

8> The echocardiogram was definitely the worst, but probably wouldn't be for other people. I just happened to catch the tech doing the test on what was obviously a bad day, and I think she vented her frustration on my chest. I could tell as soon as I saw her that she was flustered and I might've considered rescheduling but I'd already wasted two hours of my life driving there (and back.) The test is a little uncomfortable in general because you have to hold your breath a bunch of times and you have to just stop breathing. You don't get to take a breath and then hold it. Just trust me, it's more challenging when you just stop. But the really bad part was that the tech was just pummelling me with the transducer (ultrasound wand thingy)! Seriously though, my chest is bruised! Fortunately, this was the one test that my husband had ridden along with me so I had someone to complain to immediately, and then we had a nice lunch out and a chance to chat in the car.

9> I forgot to mention in the list before that I had to wear a Holter monitor (a portable heart monitor) for 24 hours. Wearing ten sticky leads for a whole day is itchy and annoying, but totally do-able.

All in all, the testing was no big deal, but driving back and forth is getting old. I gotta go back for repeats of the neuro test this week and then I'm scheduled for my first dose next week. I have to take the first dose (this is called "randomization") at the center, and then be monitored for 8 hours, just in case I have a reaction and try to die or something. They have cable and comfy armchairs, and wireless internet so I can bring the lap top and let you all know how it goes.

5 comments:

Bald Ben said...

I too was sucked into the facebook world. I entered with the pretext of finding an old friend and I had planned to never go on again. Needless to say I end up on that stupid thing like ten times a day.
It is pretty remarkable, though, the lost connections and ease of communication is really unmatched.

Anyway, good luck on the trial. There is so much going on in new treatment and I feel like I am letting it all go by. It's pretty bad ass that you have the balls to go about these new things.

I go see my neurologist Monday and I'm really going to push for a change.

Way to be be inspirational.

Be well.

LISA EMRICH said...

Thanks for sharing all this information. I look forward to your rendition, while you are proving not to try to die within those 8 hours.

btw, the most painful post of your testing (at least for me) was reading about tattoos on your feet. That just sounds painful. ouch.

john said...
This comment has been removed by a blog administrator.
pUNKrOCKfairy said...

BB- thanks for the vote of confidence! Don't make fun of me if I end up whining about uncomfortable side effects. :)

Lisa- feet are undoubtably the most painful part of the body to get tattooed. Much worse than spine, or even ribs. Warn your friends.

BRAINCHEESE said...

Dude (and I'm not a surfer),

I HAVE missed you here...between you and BlindBeard, I maintain a will to live because I don't have to sort through "I have MS, but it doesn't have me" bullcrap attitude writing. I will say this sincerely though: Thanks for doing the study even if completely inconvenient for you...seriously.

I NEVER have to hold my breath for any length of time for ECHO's...I think your tech was smoking crack that day! Next time, don't do but pretend to and see if she even notices...hehe.

Looking forward to reading more of your adventures soon.

Oh, I also got sucked into BaseFu#K, too...or is that FaceBook? I'm Linda Du by profile...I only tell you this because I HAVE no friends...LOL