This time I cannot blame the Copaxone. I guess we're calling it parasthesia but I think torture is simpler and maybe closer to the truth. (Have you noticed my love of vocabulary? Sorry if it's annoying.) My feet have been alternatingly burning and freezing while simultaneously numb and tingly. Is it even possible for Normal People (non-MSers) to have this many differerent sensations happening in a body part at one time? This has been going on for more than a week and I have tried it ALL. I've tried warming up and cooling down. I've tried all the meds at my disposal. It seems to be worst in the morning, late at night, and whenever I'm moving around a lot. And it's spreading; north up to my knees at times.
It started right before I came down with Shiva's cold, and I told the Novartis Chick about it like, three days in. The Novartis Doc blamed it on my cold, ("Maybe you're running a fever," he says 5 minutes after the nurse had determined my temp was normal), but I was pretty sure he was wrong. So I went to my usual neuro. Usually I think of my guy as damn near sainthood, but this time he sorta looked at me in a way that made me feel completely pathetic and said, "You have MS, what the hell did you expect?" I'm euphemising of course, but that was the gist. He did NOT say that I was relapsing -I like to call it "backsliding"; I stole that from the Christians - or even having an exacerbation. He prescribed me Nortriptyline which hasn't made a lick of difference yet. In fact, it's gotten worse and I am standing on the precipice of contemplating amputation. I'm in the burning stage now and have just agreed to putting them in ice water at Shiva's suggestion. Okay, I put one foot in and he made the steam hissing sound effect, and now it just feels numb. Now it's that stupid feeling you get from IcyHot ointment. Alright, fuck this, let's just lop them off.
I called the Novartis Chick again today and she asked if I'd been having any other symptoms, like fatigue. I told her the other day that I have been pretty fatigued, but also having a hard time sleeping at night. She knows how wacked my work schedule is too, but this time I left out all the excuses I tell myself (other than MS) and everyone else for being tired all the damn time, and just admitted that the fatigue right now is baaaaad. She said she'd talk the Novartis Doc and call me back. Must've lost my number.
Tuesday, March 31, 2009
Tuesday, March 10, 2009
I've been randomized.
Randomization. The word is, thus far, more intriguing than the experience. For those who don't know: randomization is the first dose in a drug trial. It's when you are blindly given either THE DRUG or the placebo. (Sometimes it's blind, differing doses of THE DRUG.) Today is MY randomization day! I'm at the center where the study is being conducted for Novartis' FTY720 (Fingolimod) trial, being monitored for 6 hours after my first dose of what may or may not (Shhh! It's a secret.) THE DRUG. After much help from the nice IT guy here, I'm now slurping from their wireless trough, surfing their cable tv, and I even got a free lunch! (A big thanks to the radiology techs here for sharing their spread! What can I say? Radiology is a small and tight knit family.)
Just so I can satisfy the curiosity of other potential Lab Rats, lemme tell you about today so far:
Came in at 9am and met the woman who is monitoring me today. It has to be a person who's new-to-you to ensure "blindness" and objectivity. Had an EKG and was hooked up to the Holter monitor again. I gotta wear it for 24 hours again, but this time I got "stickies" that are for folks with sensitive skin. I was skeptical at first, but I am a hell of a lot less itchy than last time.
Waited for an off-site MD to read my EKG and get the thumbs up to dose. New Woman checked my temp, blood pressure, and heart rate (furthermore referred to as vitals) before giving me a small pink capsule to swallow with water. I worked last night and the ER was retardedly busy so I tried to nap, but couldn't overcome the espresso I had to drink in order to get here on time. Watched some of the Today show and Ellen, all the while having vitals checked hourly. I ran into some old friends from the radiology world and had lunch (always the patient and the professional). Finally got online, thanks to NO SKills of my own, and here we are.
Not only have I successfully not died, I feel fine. I think. I noticed my heart rate is much lower than usual, which is an expected side effect of THE DRUG. I told myself I wasn't gonna speculate about whether I was on the real thing or the placebo, but now that I've taken it I realize I was just bullshitting myself if I thought I wasn't gonna be hyper-self aware. I mean, I'm sleepy, which could account for my low heart rate, and the weird taste in my mouth could just be bad-breath, right? I dunno, but I refuse to go bat-shit crazy for 2 years trying to figure it out. "They" (other trial participants, people half a step removed from the study) have told me that THE DRUG is easily tolerated by most. Some have had nausea for the first couple of weeks, but I haven't (yet?). I do have a freakishly robust GI system. No really, I very rarely suffer any kind of upset stomach, gas, indigestion, food intolerances, or anything. I may be a flabby, limp noodle on the outside, but I am intestinally fierce!
We'll see. Doesn't that piss you off? Everything with MS is, "we'll see." "We'll see if this drug works for you." "We'll see if you can walk in 10 years." "We'll see if you can tolerate painful injections foreverandeveramen." "We'll see if they discover a cause/cure for this stupid disease." "We'll see if we feel like covering the costs of your prescriptions." "We'll see how tough you really are missy, 'cause your in for a raucous fuckin' ride now!"
Just so I can satisfy the curiosity of other potential Lab Rats, lemme tell you about today so far:
Came in at 9am and met the woman who is monitoring me today. It has to be a person who's new-to-you to ensure "blindness" and objectivity. Had an EKG and was hooked up to the Holter monitor again. I gotta wear it for 24 hours again, but this time I got "stickies" that are for folks with sensitive skin. I was skeptical at first, but I am a hell of a lot less itchy than last time.
Waited for an off-site MD to read my EKG and get the thumbs up to dose. New Woman checked my temp, blood pressure, and heart rate (furthermore referred to as vitals) before giving me a small pink capsule to swallow with water. I worked last night and the ER was retardedly busy so I tried to nap, but couldn't overcome the espresso I had to drink in order to get here on time. Watched some of the Today show and Ellen, all the while having vitals checked hourly. I ran into some old friends from the radiology world and had lunch (always the patient and the professional). Finally got online, thanks to NO SKills of my own, and here we are.
Not only have I successfully not died, I feel fine. I think. I noticed my heart rate is much lower than usual, which is an expected side effect of THE DRUG. I told myself I wasn't gonna speculate about whether I was on the real thing or the placebo, but now that I've taken it I realize I was just bullshitting myself if I thought I wasn't gonna be hyper-self aware. I mean, I'm sleepy, which could account for my low heart rate, and the weird taste in my mouth could just be bad-breath, right? I dunno, but I refuse to go bat-shit crazy for 2 years trying to figure it out. "They" (other trial participants, people half a step removed from the study) have told me that THE DRUG is easily tolerated by most. Some have had nausea for the first couple of weeks, but I haven't (yet?). I do have a freakishly robust GI system. No really, I very rarely suffer any kind of upset stomach, gas, indigestion, food intolerances, or anything. I may be a flabby, limp noodle on the outside, but I am intestinally fierce!
We'll see. Doesn't that piss you off? Everything with MS is, "we'll see." "We'll see if this drug works for you." "We'll see if you can walk in 10 years." "We'll see if you can tolerate painful injections foreverandeveramen." "We'll see if they discover a cause/cure for this stupid disease." "We'll see if we feel like covering the costs of your prescriptions." "We'll see how tough you really are missy, 'cause your in for a raucous fuckin' ride now!"
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.
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.
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