Friday, March 20, 2009
18 month milestone
Today marks exactly 18 months since I popped that first little mauve capsule and wondered "what the heck have I just done??!!!" and proceeded to worry about all the side effects to which I would soon be subjected.
I went yesterday for my 6 month Extension Phase checkup. Everything went really well!
I'm most proud of my performance on that numbers test thing. The one where they play the CD with the smug guy spouting numbers and you have to add together each pair. He says "Seven.....Nine" (you say "16) he continues with "5" (and you have to throw away that 16 you said and add 5 to the last number he said -- in this case 9 -- and say "14").
Out of the 60 consecutive numbers that he said, I missed ONE (1) (yes, count them...O-N-E) number!! I was so proud of myself. The lady testing me was pretty impressed, too.
The peg test went as it normally does. I fight getting them out of the bowl, putting them in the little peg holes and getting them back out to drop in the bowl again. I guess I do it in pretty good time, but I feel so uncoordinated while I'm doing it. My hands don't do the minutia the way they used to.
At my PFT (pulmonary function test) the guy who did it is the guy who always does them and has since my very first one a year and a half ago. He commented that, while I had been within the normal range on my very first test, it "seems like that stuff must be doing good for your MS because you don't seem nearly as weak as you did the first time I saw you."
Hey, at 48 I guess that's about as good a compliment as I can expect. I'd have rather heard "you look 20" but I'll take what I can get.
I got hooked up to the spaghetti mess of carburetor wiring and had an EKG. She swore I moved and I swore I held still. We both agreed it would just have to do.
I had lots of blood taken, peed in a cup, and had my EDSS test.
For those of you not familiar with an EDSS test, it goes something like this:
The neurologist examines you and has you follow his finger with your eyes while you hold your head still. (looking to see if you can track in a smooth motion with no jerkiness)
Then he touches your face with both hands in a gentle brush at forehead, cheeks and jawline while asking if it feels the same on both sides.
Then you have to smile real big and stick your tongue out and say "AH!"
He asks if you have any trouble swallowing or eating.
He then checks for weakness by having you push and pull against his resistance with each arm, and then each leg. He has you make a fist and has you pull and push against him with that to check the wrist.
Then he gets out this cold metal thing that buzzes when he wacks it with his hand. He places it against fingers and toes while having you close your eyes and tell him when the buzzing ceases and you can no longer feel the vibrations.
He asks if you feel the cold when he touches your body on each side in various places with that (apparently multi-purpose) gadget that was just buzzing a minute ago.
He has you close your eyes and he bends your fingers and then your toes both up and down, asking if you can feel in which direction he just bent said appendage.
He gets out the little triangle rubber mallet thingie that he wacks you with on various reflex points, knowing to stay well to the side of the flying feet when he wacks the knees. (I can cause my leg to fly out just by slapping my thigh when I laugh hearing a good joke. Never stand in front of me and tell a joke.)
He has you walk across the room doing the heel to toe drunk walk. Then you stand, feet together and arms straight out in front of you, palms up. He has you close your eyes and then he catches you when you fall over (as I did).
You walk on your tippy toes, you walk on your heels, you hop on one foot and then the other.
Then he asks you a bunch of strange questions while rating you from 0 to 4 on each answer (I think it's 0 to 4). I score 1 on a few answers but mostly 0s.
The questions are ones like "Are you depressed?", "Are you happy for no reason?" (like one must have a reason to be happy because life sucks and anyone that is happy for no reason must have a big MS lesion right over their sane spot on their brain.)
"Do you have any problems with bladder or bowels?" (no comment)
And a bunch of other stuff I don't remember...oh! One question was "has your MS interfered with your sex life?" and I answered "I don't know, I don't have sex." To which he actually chuckled and said "you said that 6 months ago, too." To which I responded with "If I had sex, it probably would interfere with my MS life, so I don't bother." Like people can't actually be happy and have a fulfilling life without sex?? I beg to differ...but that's another story.
Then after the game of 20 questions comes The Walk.
The dreaded walking of the hallway 25 times...to equal 500 meters. OMG it just KILLS me to walk that stupid hallway. I hate it. I did very well, completing the 25 laps and not crashing into anything although I tripped over my own feet on the very last lap and stumbled to the finish line. But I made it.
And that pretty much sums up the EDSS test.
There were a bunch of MS patients there yesterday. I know because they were all having to walk the hall and I don't believe they subject any other neurological group of patients to that particular punishment.
After all that I got my new meds (the real reason a fingohead like me shows up for the appointment in the first place) and had to sign yet ANOTHER informed consent.
This one was 23 pages long and now they have you initial every page along with the grand finale signature at the end.
I actually read all the new stuff in the adverse events section and found they had added a big section relating to the issues surrounding the earlier deaths in the study.
Now they make you well aware that anything related to the herpes virus is a dangerous (possibly lethal) thing to come in contact with. You are warned not to get vaccinated for chicken pox or to come in contact with anyone recently vaccinated, and to stay away from anyone who has Chicken pox, shingles, viral meningitis, herpes, etc.
Kind of hard to do considering my own HSV diagnosis, but nonetheless...
So, what started as a routine call to my son's doctor's office today to get a prescription refilled for his asthma ended up being a long drawn out strategy session about how to get him to the office for a physical that was due when many of the patients coming and going are going to either have chicken pox or have just been inoculated against it in the office.
They use a live virus for the vaccine.
I have a call in to my trial coordinator about what a regular person who has a life outside of being a guinea pig for science is supposed to do when their kid is due for a vaccination. Just how long am I supposed to avoid chicken pox exposure?? For the rest of my pill-popping life?? No answer on that yet, but I'll post the answer when I get one.
Anyhow, it was a great checkup. I was happy with how happy everyone seemed with my progress.
And now it's been something like 23 months since my last MS attack... I know it was April of 07 that was the last time I had steroids. I don't miss them one bit!
Normal, boring, everyday life is a damn nice thing to experience. I could get used to this all over again.
Here's hoping for another 18 months just like the last 18 months. Cheers!
Posted by Jeri Burtchell (TickledPink) at Friday, March 20, 2009