December 30, 2008
December 19, 2008
December 15, 2008
I had my screening for the Fingolimod research study yesterday. It was a long and busy day:
I got lost going downtown and was 30 minutes late! Rather than arriving at 7:00am, I walked in at 7:30 but nobody seemed to care.
First I met with the research doctor who did a cursory examination and was ready to answer any question I had. Because of my almost constant investigation and reading of histories, press releases and blogs, the newest announcement late last week resulted in only one new question. Thank god, because I was kinds of scared of saying, "Nope, I know everything I need to know." I thought he'd look at me like I was insane or something.
Anyhoo, two deaths were mentioned in the release, attributed to "fatal herpes infections." I spent all weekend trying to figure out how a herpes can become fatal. The doc explained that the deaths were caused by encephalitis - or was it meningitis, shit, I've already forgotten. Anyway, they both occurred in India, and and he told me how to recognize it. We had maybe a five-minute conversation about it and my fear was alleviated.
Okay, so far, so good. At that point I was turned over to a Nurse who went over the schedule for the day and walked me to the first appointment. The sequence of events went like this:
1. MRI with and without contrast. My rotten veins did not want to accept the contrast agent and the nurse had to stick me in four different places. When she finally got a good vein she took the opportunity to draw all the blood they were going to need. Keep in mind, I was still on the MRI table with my head in the cage and the mask over my eyes so I couldn't actually see any of this (which was probably a good thing).
2. Walk next door to the CT scan of my lungs.
3. Peed in a cup.
4. EKG and attachment of a Holter Monitor.
5. Expanded Disability Status Scale (EDSS) test.
6. The Multiple Sclerosis Functional Composite (MSFC) test.
7. Low Contrast Letter Acuity Eye Exam
8. Paced Auditory Serial Addition Test
9. Now it was examination time by the 'blind' doctor, who is not involved in the study, doesn't want to hear about it or my history, which was kind of interesting. All he is supposed to do is evaluate me at that moment. It was a very thorough exam and when he was done he THANKED me for my participation and said it was people like me who allow advances in medicine to even occur. Wow, huh? That was such a nice thing to say, I think I might have blushed.
Repeat of #5 - 8.
Then it was back to the car for the drive to a nearby hospital for the Pulmonary Function Test.
By now it is around 1:45pm and the next and final appointment for the day was in another building on the hospital campus in 45 minutes. I stopped by the nearest cafeteria and inhaled a healthy-sized piece of quiche. I think it was good. I was so hungry and woofed it down so fast, I really don't think I tasted it.
Finally, the Ophthalmologist for an Optical Coherence Tomography exam. According to a neurology web page, "This test is used to produce detailed images of the retina. It is much like ultrasound, except that it uses light beams instead of sound waves. Optical coherence tomography helps physicians evaluate problems with the retina such as swelling and holes, as well as abnormalities of the optic nerve. It can be useful in diagnosing and monitoring glaucoma.
During the exam, focused beams of light are directed into the eye. The light beams scan the structural features of the retina, producing a cross-section image similar to a topographical map. The test takes about 10 to 20 minutes and usually requires dilation of the pupils." (Author: Dale K. Heuer, MD; September 14, 2004)
I got home about 5:00pm, and managed to keep my eyes open until about 7:00pm. At that point I zonked out and slept like a dead person until sometime after 1:00am. I'll take a nap early this afternoon and will hopefully get back to a regular sleep schedule tonight!