They say timing is everything, don't they? A month ago I started the Fingolimod trial, and a few days later I got a nasty cold (an expected side effect of the Fingo). A few weeks ago I developed a new symptom and saw the neuro, but was assured the new symptom was not a big deal. Three days after seeing the neuro my legs went wonky, and I couldn't get Novartis Chick to call me back. A week after that I could barely walk, and still couldn't get anyone to call me back. The last time I had a relapse/attack/exacerbation (whatever you prefer to call it) I was chastised for not seeing the MD sooner. My neuro told me I had kinda missed the bus on taking the steroids at a time that might've affected the severity of the relapse. THIS TIME I went to the neuro and called the Novartis study people right away and nobody paid it any freaking attention! I am so frustrated with this impossible game of timing. When is it not-too-soon-but -not-too-late to call about feeling like a steaming pile of shit? Why do I always NEED to call when the doctor is overbooked, out of town, or just not feeling very interested in me that day? I'm not a huge fan of the steroids, but I do wonder if they would've let me avoid limping around the hospital for the last 2 weeks and making me feel like a zombie for a month. Now I wonder if they'll do me any good now that I'm STARTING to feel a little better. The Trial MD says yes, my neuro says no. What the hell?

Because of this recent relapse, many well-wishing colleagues and family members have more probing questions about the drug trial and what made me decide to get in it. When I explain to these kind and worried souls that the trial is blind, and that I may be on a placebo for 2 years they just totally lose their shit. "Oh my gawd! What if you're going UNTREATED for 2 WHOLE years?!," they exclaim. And then I give them my reasons , none of which are as brave as Bald Ben over at Did You Know Montel Williams Has That? implied in his recent blog when he mentioned me so kindly. He is now thinking of joining a trail too so I thought I should post my real reasons:

1. I'm afraid of PML. I know it's unlikely, but people underestimate the persistance of my bad luck. If there's a chance of something going wrong, it will go wrong for me. Murphy's Law has apparently been ammended to my own personal Constitution. And I'm intimidated by the plan being to "monitor Tysabri users very carefully against the threat of PML infection."
Really? How are they going to do that? Because I've already covered the fact that I apparently don't know when to cry "HELP!" How crazy will I make myself on Tysabri if I have to be on the lookout for everything and nothing? Because I relapsed while on Avonex (which my neuro considers functionally similar to Rebif and Betaseron), and couldn't tolerate Copaxone, Tysabri is the last of the FDA approved DMDs for me to try. And I know lots of folks love it and have improved greatly, but the one and only real-life person (not to imply that you bloggers aren't REAL, 'cause I think of yous guys as friends) I know with MS has done horribly on Tysabri and had a really hard time even tolerating the infusions. Plus, it's so fucking expensive I'm worried about reaching my lifetime limit of benefits before I turn 40. I'm just not ready to get on the Tysabri train.

2. I won't be a viable trial candidate forever. Right now I'm young and relatively healthy. I know having MS doesn't put me in the ideal health category, but I don't have cancer, heart disease, vascular disease, liver disease, reduced kidney function, GI problems, GU problems, or even high cholesterol. There's no chance of my becoming pregnant or wanting to breastfeed ever again. I can still walk (most of the time) and drive myself to the myriad appointments I have to keep for the trial. These things won't be true forever so I know that if I'm gonna try a trial drug, now's the time.

3. Fingolimod is a PILL. That is hugely significant to me. I don't personally have an issue with needles, but I'm sure there are plenty of MSers that do, and I love the idea of helping give those folks some hope for an oral DMD in the future. I do really hate the idea of having to make an appointment for an infusion every month indefinately as well, which is another strike against Tysabri. (Despite the fact that I am perfectly capable of starting my own IV and running just about any liquid I please into my arm, there's no way in hell those TOUCH people are gonna let me give myself Tysabri infusions. I wanna hold onto my habit of autonomous healthcare as much as I can.) I'm stubborn and I'd rather just stick myself unless there's tattoo ink involved.

4. It's only 2 years. I had more confidence in this reason before I had my 2 most recent exacerbations. I find it very disconcerting that I had one start in October '08 and the next start in March '09. That seems like too many, too close together, too soon after fiddling around with my treatment options. On the other hand, it took 2 years just to get diagnosed with this damn disease. And in the big picture sense of your life span, 2 years ain't shit really. Jeez, those kids on LOST were off the Island for THREE years and they didn't even bring back longer hair with them. Although John Locke did go from alive to dead to alive again. That's a pretty significant amount of change and he wasn't off the Island as long as the others... whoa, I'm way off track.

5. The chances of Fingolimod making me feel like shit were very, very small. And it doesn't, if I'm on THE DRUG. I researched the potential side effects of Fingolimod and didn't find anything too alarming. Macular edema and increased opportunisitc infections seemed a manageable trade off for free drugs and testing. Both of which are being closely monitored during the study which means I get to keeping ogling the cute opthamologist they send me to regularly. And it gives me a viable excuse to avoid patients with Shingles at work. (Just Shingles though, the rest of the cooties I'm still swimming in with the rest of the fishies.) Also, the trial does not require that I make any lifestyle changes. If I hadn't quit already I could've kept smoking, not that I want to. I can keep getting tattoos and keep doing my low-cal diet (I've lost 11 lbs!). I can travel, skydive, or just take my kids to the beach. Though I'll keep staying under the umbrella and spraying on the sunscreen because there seems to be increased incidence of skin cancers in Fingo-takers. Altogther, they aren't really asking too much of me.

So there it is. Not particularly brave or self-empowered motivations to do the trial drug. My hubs did encourage me by saying that it could eventually help a lot of other MSers, and I do sorta feel like I'm honoring the memory of my granddad (see previous post here). I'm not sure hashing out all my sideways logic really justified a long-ass post like this, but too late to turn back now.

Burning and Freezing Redux

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.

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!"

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.

Hell month is over at last.

Well, actually don't take that title too seriously. I'm celebrating February 1st only because it marks a respite from holidays for me and mine. My birthday is in the beginning of November and is kept company by my dad's birthday and Thanksgiving. December herald's my son's birthday, Christmas and New Year's of course, and also my wedding anniversary. And then, just when we've gone completely broke, January comes along with 5 more birthdays. YES, FIVE! My daughter's, husband's, stepmom's, little brother's, and best buddies' special days all occur between January 14 and 31. Finally it is February and because of that list I just gave you, we don't get too amped up about Valentine's Day 'round here.

Now that I won't be SO busy I might have time to enjoy the fact that I've been feeling so good. I started working out the week after Christmas because I decided that being sad about feeling fat wasn't likely to change the fact that I am fat and getting fatter every year. So I've stuck with working out at least 3 times a week for more than a month now and I feel great. I have only lost a few pounds, and that's disheartening when I feel like I've eaten well and tried so hard! But at least I'm not getting heavier and I probably just need to eat less. I've kept a food journal so I know I haven't done that bad, but I haven't been counting calories or anything. I hate counting anything related to food including calories, carbs, fat, bites, portions, sugar, or fiber. I did stop eating sugary things like cookies, cakes, ice cream, candies, chocolates as soon as Christmas day was over. And I only cheated to have a little tiny bit of cake and ice cream on 2 of the 5 birthdays. I feel I've been downright saintly in the kitchen so I don't get why I haven't lost more pounds or inches, and I'm starting to get a little pissed about it. I know, take out my anger at the gym and stop pestering all of you with my weight woes. I'm determined to keep trying this time.

My most important news after a long break from posting is really just that I'm doing well. I've been off all disease modifying meds for 2 months now and I feel great. I have energy and all my parts are working. I've been feeling strong and coordinated, even at work. Muscle spasms have been no better, but no worse and I'm managing them fine with the Baclofen. I've been in good spirits and less short-tempered with my short people. My hubs and I have been getting on well despite the fact that we're feeling ALL the effects of The Economic Issue. I'm going for my first screening in the Fingolimod trial this week and should start taking the pill (yes, PILL, not shot!) in about a month. I'm excited about it and have decided to just expect good results. I'll be sure to keep you posted on the whole bidness.

TTFN Pooh!

Got my Solu-Medrol Cherry popped.

So I was at work yesterday when this crazy ass headache crept up behind my eyes and my vision started to go all blurry like I couldn't keep things in focus. My left eye started to hurt and I just had the weirdest feeling. So on my lunch break I decided to run across the street to my neuro's office just in case. I really thought these feelings could be more likely related to an oncoming migraine rather than optic neuritis but I was freaked so I went. He didn't see anythig when he looked in my eyes, and agreed it could just be a migraine but decided he'd rather be safe than sorry and gave me a round of IV Solu-Medrol in the office. He sent me home with a week's worth of PO Medrol too.

Lemme start by saying thanks to all the bloggers who have posted abut the myriad side effects of steroids. At least I was warned that I would feel like a maniac. There were however, still some surprises in store for me. First I was shocked by how quickly and how much better I felt by the end of the infusion. Unfortunately I was also surprised by the gawd awful taste in my mouth and further by the fact that the taste hasn't gone away. Everything tastes like sweaty hairy ass right now and the only exception I found is sweet tea. This seems related to the paradoxical situation with food in general. I want to eat every thing in sight until I taste it and then I never want to eat again. I feel plain odd and fidgety and paranoid, but at least I have the energy to do all the Xmas Eve cleaning and cooking. The cooking's extra challenging today since I use recipes really just as suggestions and usually season to taste, and I'm making a traditional Italian Christmas Eve fish dinner for 12. Hope it tastes good to all my husband's Italian relatives, 'cause how the hell would I know?

Mostly I'm surprised that I'm having these issues at all. My husband says it's naive of me, but I really thought I could skate throught the 3 month wash out period with no meds before I start the Fingolimod trial without any detriment. Last night though I was laying in bed when someone snuck under the covers and locked my left arm in an invisible vice. I admit I panicked a little. I couldn't move my left wrist or hand at all, and there was an intense crushing sensation in my forearm. I got up and took the next dose of Medrol and it felt better this morning, but still not right. All the left sided ataxia from my last relapse had seemed to go away a few weeks ago so I don't know if this is NEW or OLD. Grrrr. Very frustrating.

On top of feeling creeped out and bizzaro, my neck and joints are hurting and I'm gonna blame it on the drugs and the MS because it's a beautiful 78 degree Xmas Eve here in Florida. I finally feel a little Christmas-y though at least so it's back to the holiday chaos now.

My day is totally kicking ass! Bring on the FINGO!

This is a good day. The sun is shining on this b-e-a-utiful Florida day and I'm back to feeling pretty good. I saw the neuro today and he gave me the thumbs up to join the Fingolimod trial taking place nearby. I thought for sure he'd be cross with me for quitting the Copaxone (I have to wash out for 3 months before starting the trial.), but he was totally into it. Turns out he used to do some clinical trials himself and used to chair the IRB (safety committee for medical research) at the hospital where we work. The nurse took a look at the lumps I was getting from the injections and said he would probably want to discontinue the Copaxone anyway. I don't know why really but I fully expected him to tell me I was a crackpot for risking myself with a un-FDA-approved drug and would chastise me for skipping the last two weeks of Copaxone. Instead, he was really supportive and gave me some good info about how clinical trials work. This encounter reaffirms my choice in neuros and confirms my addition of him and his staff to my Xmas card list.

I can't wait to get started in the trial. I know it's ridiculous, but I feel like I'm carrying on a family legacy by participating. My grandfather did a lot of medical research and invented a lot of really common medical products. As common as Hep-locks and prosthetic hips. My whole life my mother would occasionally get this weird look on her face and say, "You are JUST like my father." I never knew if it was a compliment or insult; they sometimes had a strained relationship. But I got to spend some time with him before he passed away, and I think she was right. He and I were/are similar in our analytical-ness and way of communicating. Plus, he was a dirty old Englishman and I think I may be the only person who really appreciated his sense of humor. I visited him once in rehab after a severe foot injury (diabetic neuropathy) that he got by driving his scooter like it was an ATV. I told him I was going to the store and asked if he'd like me to pick up anything. (He loved sugar-free hard candies.) So he says in his thick south UK accent, "Yes, love, could you get me a new ass?" And sucker that I am asked, "What's the matter with your ass?" And straight-faced, dry as hell he says, "It's cracked right down the middle." He got lotsa giggling and eye-rolling from me, but the nurse didn't even crack a smile. So either only I think that shit's funny, or she couldn't understand a word he said. Either way, he was a great guy and I know he would totally get behind me on this drug trial though he'd also pick apart the trial and riddle me with questions. He died before I was diagnosed but I know his respose would've been, "That's shit luck, that," and never have treated me any different. Might've even forgot all about it, or offered me his pogo stick (cane). He stayed savvy till the very end though and his will included donation of his remains to medical research. He was the one who convinced me to seek a career in medicine and radiology would be best because "It's all knob-twiddling and button-pushing. You love that stuff. Plus there's tons of advancements to come in the technology to keep you from getting bored. And since you live in Florida, where people go to get sick and die, you'll always have work." Sage advice from a very practical man.

And the second fantastic thing that happened today happened while I was in the shower. (No not that! Cheeky!) I'm in the shower and my hubs pops in and says, "Hey, a friend stopped by and needs to use the toilet. Do you mind if he comes in?" (We only have one bathroom.) And I'm wondering who it could be that my jealous husband trusts to be in the bathroom while I'm naked on the other side of a flimsy curtain and I hear, "Hallooo Julie!," in the sweet voice of my hubs' best friend of 30+ years. He's been away indefinitely on the other side of the world for way too long, and surprised us by coming home at last. He and my husband have the same weird-ass name (They're both named Shiva, after the Hindu god of destruction. Other Shiva used to date a girl also named Julie. Lemme tell ya, there was major confusion on the phone and lots of jokes about going into the wrong bedroom.), and are the reason "brotha from anotha motha" is the most common cliche in use around here. He is truly family, and our life is better when he's around. Anyway, I was so excited I had to fight the urge to jump out and hug him naked and dripping! Instead I just shrieked, "I love you!" and finished up as quickly as possible. He's been gone so long that it's dream-like to have him back in our presence. He is easily the luckiest sonofabitch I've ever known and hopefully it'll rub of on my Shiva in the way of some profittable employment. If not, I don't care, I'm stoked!