Saying the Big No: Decision and the Informed Patient

As an MS forum community leader, I’m always there to dole out advice whenever a new patient is stressed beyond endurance.  She posts a desperate and harried rant about how painful the shots are, how awful the side effects of her symptom meds have been, or how terrified she is of that loud, claustrophobic MRI tube. She wants to chuck the whole enchilada and hide out in her bedroom. Take heart, I tell her, there are things you can do to be more comfortable. For painful shots, try icing or heat beforehand. And if your symptom meds aren't working or they've turned you into a werewolf, call your doctor for a dose adjustment or an alternative medication. (They won’t give you a silver bullet, though, I've asked.) Afraid of MRI tubes? Knock yourself out with Ativan before embarking on that journey into the doughnut hole. Though such suggestions roll glibly off my keyboard, I sometimes struggle to take my own advice and must privately beg a friend to talk me down from the ledge. Once in a while, being rational just doesn't cut it anymore. I have to take a break from being a grown-up and curl up in the fetal position.

Given such regressions, it remains easy for me to understand the new patient’s frustration with an unfamiliar medical world. Doctors just cannot or will not give us the footnotes, disclaimers, addenda, and glossaries of disease management when they hand us our MS graduation certificates. We must learn the language of our disease from other patients. Dialogue with experienced mentors earns us advanced knowledge of MS pharmacology, CNS imaging, and alternative therapies. The payoff reveals itself the day that helpless voice inside us drops to a whisper. We discover our power in small epiphanies. We question each new symptom med, say a tentative little yes, try it out, and squeak out a little no after a while if things just don’t feel right. One would think it gets easier with practice, pronouncing our yeas and nays, but it’s as laborious as walking on spastic legs, feeling as though we are slogging through wet concrete.

To disease education we should say yes. To the notion of asserting ourselves with our specialists, counter-intuitive as it might feel, we should say yes. And early in our RRMS disease journey, we really ought to say yes to one of the available disease-modifying drugs as soon as possible. Say yes because we are still learning, because this is a disease that has to be experienced to be known and the same goes for its treatments.

With more learning we discover the myriad gray areas in the world of Multiple Sclerosis. We read clinical study abstracts and actually sort of understand them. We learn that side effects lists are really a hodge-podge of hangnails, coughs, rashes, headaches, twinges, infections, and organ failures that study subjects are required to report during clinical trials, but which might not be related to the trial drug at all. We learn the limitations of our 1.5T and 3T MRI machines. We are flooded with light-bulb-above-the-head moments, one being the second we realize our neurologist is just a member of our little consulting team, not the guy who brought the stone tablets down from the mountain. We get smart and we get skeptical. Cocky, even. We might stand tall at a podium and tell the professionals to kill the fatted calf and party hard at our coronation festival because we’re taking over our disease management. It’s good to be the king. A king can say no. A wise king can say no with the confidence of having made an informed decision. And not just a little no. The big no.

I uttered the big no in 2011 when I discontinued Tysabri and decided not to take any disease-modifying drugs to replace it. I've been riding bareback, if you will, ever since. Although I didn't think so at the time, this was a significant decision. Just five years ago, when I was starting out as an advice-giver, if a patient had said she was planning to do this I’d have done my best to talk her out of it. At the time it would have sounded reckless and impulsive to me. But not now. There was, after all, a heck of a lot of context behind my decision.

We humans like to look for patterns, it’s how we keep our sanity in the wake of all the random stimuli that assault our senses. And though we know MS is unpredictable, we come to know our own flare patterns, or what we perceive to be patterns. My pattern seems to be one flare every five years or so. Now, that might sound peachy as far as active disease goes, but it makes determining whether my DMD is doing its job nigh onto impossible. Sound like the drug is responsible? Let me explain.

After my first flare, I was given no diagnosis and therefore took no DMD. I didn't flare again for five years. After that, I took Copaxone for the next five years—and flared again in year five. I monkeyed around with Rebif and Tysabri for a year and then chucked it, almost the whole enchilada (I do still take symptom meds). I won't elaborate on all the complexities of taking these drugs; suffice it to say that those experiences heavily informed my ultimate decision as well. It all added up to a light bulb moment: I became convinced that DMD or no DMD, I’m going to flare once every five years. So the next flare might, by my reasoning, occur sometime in 2014 no matter what.

I didn’t hide in my bedroom, didn’t curl up with my blankie. My neuro is biting her nails, though; she’s worried about the enchilada-chucking. Except for one thing. I also informed her that I will cease having any further MRIs. They are a tool for tracking our lesion loads, and mine remained boringly stagnant even after a long and disabling flare. Light bulb moment: Lesion load does not necessarily correspond to the degree of disability. Light bulb moment: Commercial strength MRIs can’t reveal everything that is happening in the gray and white matter. And besides, my Medicare coinsurance for an MRI is hundreds of dollars, and my SSDI check is being gnawed bloody by medical debt as it is. To all of this reasoning my neuro nodded in agreement.

But I did make my neuro one promise: That I would consider taking Tecfidera this year. I’ll be seeing her this month. I’m not sure what I will decide, but either way, I have few worries.

It’s good to be the king.

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