MS Musings

People say lots of silly things when they hear you have multiple sclerosis. “It could be worse… you could have Lou Gehrig’s disease.” Um, okay, I suppose MS usually doesn’t quite rank up there with ALS in terms of nasty neurological diseases. Wow, I feel so lucky. Maybe today I should play the lottery, too. “I know someone who has MS and she just climbed the Seven Summits.” Her name is Wendy Booker, she’s not your normal MSer, and I’m pretty sure I’m not seeing the summit of Everest unless it’s in an IMAX theater. (Okay, technically I did see the summit… from an airplane flying from Bangladesh to Bhutan a few years ago, but seriously.) “I have a couple friends with MS, Stacey and Madison. And Madison is doing great!” I know this may come as a shock, but even with MS I still have the powers of deductive reasoning. What the hell happened to Stacey? Wait, don’t tell me. “My aunt had MS… she died.” Oh, my favorite. I know someone who had MS. Thanks for sharing.

People mean well, they do (and I’m sure most are clueless as to what to say), but there has always been one comment that, at least until recently, had grated on me more than most. “At least you don’t have cancer.” When I was diagnosed I would have disagreed with that statement, indeed argued. Unlike with MS, with cancer you have a chance to beat it. I have a few friends my age who have beaten it, even from the depths of Stage IV, and are living pretty darn normal lives. But I also know those who have lost that fight far too young. It’s devastating. Permanent. Those individuals almost certainly would have chosen our fate. Trust me, you don’t want cancer. At least with multiple sclerosis, there is ongoing cutting-edge research (beyond the ever-talked-about CCSVI) that could change the face of this disease. And unlike cancer sufferers, time is on our side. One day we’ll beat this. Yeah, I said it. We’ll beat this. Until then, when I tell people I have MS, I personally prefer hearing the simple “That sucks, sorry.” Yes, it does. For now, that is.

Yesterday I got an e-mail from Jeff, a friend of mine who is an expert surfer who regularly travels the world to find monster waves. Recently he was on a remote island in Indonesia riding in the swell of 14-footers when he got too low in the barrel and it crushed him, snapping his hip in two. Dragged onto the support boat, he survived a jarring ride to shore. But that was just the beginning. There were no paved roads and camp was a mile away. After one truck got stuck in thigh-deep mud, another came to the rescue. Unfortunately, the tow-rope snapped, forcing a team of men to carry Jeff through the thick jungle to camp, where he was set down on the facility’s lone solid surface: the dinner table.  

Fifteen hours later he was airlifted to a hospital, where doctors told him that not only was he close to death (he could have easily severed a major artery with too much movement) but that his hip needed multiple pins for him to walk again. I won’t even go into the complications, like waking up during the 5-hour surgery to the sounds of drilling or how it took five days of intense pain for doctors to realize that the epidural was inserted incorrectly. It turns out that Jeff’s hip bone has a 50% chance of dying after the accident, which would push his rehab with an artificial hip into years rather than months. He’s now walker-bound and anxious as to what the future holds. What does this tale have to do with MS? Well, on the surface, nothing—it’s just a hella-crazy story. But duck under the waves and you’ll see how this parallels those first days of getting diagnosed with multiple sclerosis.  

This wasn’t supposed to happen, I know. You weren’t prepared for that monster wave. Yeah, I’ve been there. You feel like you are drowning in an ocean of uncertainty—what does your future hold? Will you still be able to do the things you love? Will you end up in a wheelchair? Dunno, dunno, dunno. I can, though, say from experience that it’s not worth dwelling over (certainly, for gosh sakes, not when you are in bed trying to fall asleep). You’ve been hit by that wave and nothing—nothing—is going to change that. Now dry off. You’ve got one hell of a life to live… just make sure that on those dim days when you need it, that dang epidural is inserted correctly.

When it comes to magnetic resonance imaging (MRI), I have far more experience than a geezing quarterback or aging pitcher. I’ve been in open MRIs, closed MRIs, even portable MRIs on trailers. I’ve had short MRIs (20 minutes), long MRIs (50 minutes), and hella-long MRIs (100+ minutes). I’ve enjoyed in my Tubes O’ Fun silence, music, and even movies (it’s hard not to laugh during Napoleon Dynamite when he talks of nunchuck skills). All so docs can get a better idea of disease activity. But do you want to see the results? On the surface this may seem like a silly question. Why of course you’d like to know how many multiple sclerosis lesions you have in your noggin’. You want to be on top of your disease, don’t you? Maybe. But maybe not. Since my first positive brain MRI, which showed two small lesions, I made the decision to remain in the dark (pardon the MRIesque pun). I’d argue—and so would my neurologist, a ridiculously bright man who actually wrote the book on MRIs (well, one of them, anyways)—that your best course of action might be to NOT know. Here’s why.

If your neuro is an MS expert—and you trust your doctor to do what’s best for your health—you personally knowing the number of lesions, in particular if it is increasing, could make a bad situation worse. Say your MRI is lit up like an arena of cell phones during a love song at a Justin Bieber concert. Option A) Doc: “We can’t count the number of lesions there are so many. Holy cow, I’ve never seen so many. Think a firefly convention in midsummer, ha ha.” Result: You stress out, you get depressed (or both) and people who love you cry and worry. Stress brings on a relapse and you get worse. Option B) Doc: “We’re seeing some activity, maybe we should look at other treatment options.” Result: You look at other treatment options… without stressing the hell out and freaking the crap out of your mom who still worries about you just crossing a street. I prefer Option B.

When you first get diagnosed with multiple sclerosis (or at least when the doc seriously suspects it), there are a number of different coping mechanisms. You might try to see just how many tears you can cry before your eyeballs dehydrate and start to deflate. You might watch a marathon of Happy Days episodes just because of the show’s ironic title, but when they sing the theme song at the beginning of every half hour, you substitute Crappy for Happy (sing along with me now, Sunday-Monday Crappy Days, Tuesday-Wednesday Crappy Days, blah, blah, jeeze that’s an annoying song). You might contemplate death by chocolate … or ice cream … or toffee squares, only to discover that you only get fat, an unpleasant bloated feeling, and a bit of gas. (BTW, overeating, especially if your comfort food of choice is Activia yogurt, is not recommended.) But, since you found this post, odds are high that you have immersed yourself in Internet research on the disease, and you now probably know more about MS and its treatments than your run-of-the-mill neurologist. If that’s you, take a breath, back away from the computer slowly, and start getting back to living your life. Don’t worry, I’ll keep you updated on any excitement that comes along. You don’t need to spend 8 hours a day (or more) trying to predict your unpredictable future. Been there, done that. So get out and have some fun!

People always give me a strange look when I tell this story. Maybe it’s hoo-haw or total coincidence. See, I think I remember the day and the hour I gave myself MS. When I went in for my Hepatitis B shot (I travel a lot internationally), my doc warned that there had been cases potentially linking the Hep B vaccine and multiple sclerosis. He asked if I had any family history of MS? Nope, I said. Did he have any patients who got MS as a result of the shot, I asked. Maybe one, he said, but it couldn’t be directly linked. I asked him what he would do and he said, “The odds of you getting Hep B on your travels are a lot greater than you getting MS from this shot.” I travel extensively, and planned to do so until I was six feet under. So I said, and this is where it gets a little freaky, “If I’m meant to get MS, I’ll get MS,” and then tapped my shoulder for the injection. A week later my symptoms started: flashes in the eyes. I’m pretty anal about my health—heck, even before MS I always made a mental note of the little things, and often wrote them down in my journal. So when I had my first severe attack eight months later, after multiple visits to the eye doc and to my PCP about other strange symptoms, I looked back for a trigger. When did all this weirdness start? Go figure. Now, do I think the Hep B shot causes MS? Not in most people. Indeed, study after study says no, and I believe them. But with me, it appears it woke up something that had been sleeping. Another vaccination or a cold (or any myriad of triggers) could have woken the MS in me a week, a month, a year later. Or perhaps it would have stayed in its slumber. I’ll never know. For a few weeks I was bummed that I could have given myself MS. But thinking back to that doc visit and weighing all the facts, I would have gotten that vaccine 100 out of 100 times. Destiny? Perhaps, and that’s okay. With all the new friends I’ve made in the MS community and with all the people I’ve helped battle this disease, I wouldn’t have it any other way.

I got a call the other day from a woman who appeared to headed to a diagnosis of multiple sclerosis. Her doctor had said it was a possibility, and just hearing those two words–multiple sclerosis–sent her down the path that many of us have trodden: Multiple Sclerosis Worst Case Scenario (MSWCS). Yeah, you know what I’m talking about. MSWCS is a common affliction of those newly diagnosed or in limbo. Your brain immediately fires up the WCS lobe and now the worst things that MS can do to you are not only a possibility, but practically a given. In a wheelchair. With no bowel or bladder control. Blind. Deaf. Can’t swallow. Can’t talk. An absent brain. And you are so numb you can only feel your nose, which itches all the time. But you can’t scratch it because you can’t move your arms. Oh yeah, and your health insurance got cancelled, your family put you in a budget nursing home, and your dog was adopted by a Mr. Vick. When these thoughts weave their way into your mind, you have to tell your brain to SHUT THE HELL UP. Sure, MS can do all of the above. But why dwell on it? MSWCS is quite unlikely. Stats show that many people with MS can and do live relatively normal lives. Yes, you’ll have to make changes. No, it won’t be easy. Focus on what can you do today and worry about tomorrow, well, tomorrow. And with the advances in MS research, odds are good that there will be some powerful treatments (potentially even fixes) coming in the not-too-distant future. So banish all MSWCS thoughts … use your brain for more important matters, like a good sudoku puzzle.

Finding out you have multiple sclerosis is a bugger. Well, you’ve read I how I initially coped with the news: oh-not-so-good. A freaked out basket case. Being happily married, every love song on the radio made me tear up like I was back in junior high. I could barely talk on the phone with friends without losing it. It seemed as if those two words–multiple sclerosis–had suddenly strangled all of my able-bodied hopes and dreams. And yes, even those don’t-think-that-way thoughts (you know the ones) seeped into the brain more than once before I shook them out for good. So how did I escape the curled-up-in-a-ball syndrome? I sat down with my brain and had a serious discussion. Is moping around doing you any good? “No.” Will it change the fact that you have MS? “No.” Is MS a death sentence? “No.” Are you the only one suffering from a disease in this world? “No.” Then stop your flippin’ whining and start thinking about today, and then the next day. You’ve got a life to live, dumb ass. … Thankfully the brain took it all in stride, only now reruns of That ’70s Show are off limits. Go figure.

My first time snowboarding after being clinically diagnosed with MS was both unforgettable and forgettable at the same time. Right around the time I got the disappointing but expect news from my neurologist, over three feet of fresh snow was falling in the mountains. The next day, gliding down Purgatory in deep powder, arcing graceful turns and straight-lining blacks, made me forget that I ever had multiple sclerosis. It was, in a word, bliss. An unforgettable day on the mountain for what I thankfully could forget … at least for a few hours.

Before going to see my neuro about my gad-enhanced MRI results, I told my wife that a positive MRI could mean a spinal tap, “but I seriously doubt she would just do it today in her office.” As I was curled up in a fetal position on the doc’s table waiting for the needle in the back, I decided, hmm, that that was a rather dumb thing to say. Most people freak at the idea of an LP. Don’t. First off, the info neurologists get from your cerebral spinal fluid (CSF) is invaluable in helping with a diagnosis. Second, the procedure does not hurt with the possible exception of the Novocain shot. You’ll feel some uncomfortable pressure when the needle goes in, but that’s more from your brain digesting the fact that something long and sharp is threading between two vertebrae! You’ll be fine, trust me. Just don’t let your brain think.

Denial. It’s actually a requirement of all MSers. Seriously. First of all, multiple sclerosis is darn near impossible to diagnose with certainty. So that inevitably leaves the door open for every single MSer to doubt, even for a little bit, their diagnosis. Second, since MS sucks, our brains do our best to logically rule in other, more benign conditions. Pinched nerve. Lyme disease. A nasty case of syphilis. Anything but MS. Truth is, this is normal. Why would I or you want to have MS? So we wallow in the off chance that our doctors, MS experts, and Noble Prize-winning neurologists have this whole thing wrong. And sometimes they do. But not usually. Ah, crap.