Some of This and Some of That: MS and the Art of the Trade-Off
In light of this year’s presidential election cycle, has it ever struck you that managing MS has some major parallels with American politics? Picture the smoke-filled backroom deals, compromises made, disappointments partially assuaged by pork barrel projects. We could even draw on business for a further analogy, where hiring requires striking a balance between education and work experience when employees rarely possess both in desirable quantities. With MS, we, too, must often choose between two things that cannot be had at the same time.
A common one is managing our medications. They all come with side effects and long-term health risks. Yet we might stumble on something that reveals itself to dramatically improve a symptom that, in turn, greatly improves our quality of life. My most recent dilemma involves just that sort of thing. I started taking Ampyra in 2013. It is designed to improve our walking speed, but for me it does so much more. It has strengthened my legs and stamina to the point where I can stay on my feet long enough to complete a shopping trip and still have strength to spare. I can stand up long enough to water my garden and to walk around my apartment complex to look at other people’s gardens, sometimes without even needing my cane. Ampyra is my miracle drug—except for one slight problem. It causes me great difficulty emptying my bladder.
When I told my neurologist about this dilemma, she asked me if it’s worth it to keep taking the drug. The question bewildered me. I had told her in previous appointments how much Ampyra had improved my daily life. She even conducted a walking speed test and compared it to an earlier one, noting that my speed was slightly faster. Speed is not my big concern, though; I’ve crowed plenty about how staying on my feet allows me to be more independent. Pushing on my belly to try to squeeze out more urine as a consequence of taking the drug seems like a small price to pay for such ambulatory vigor. Except that I’m getting bladder infections to the tune of two or three per year. And lately it’s really gotten aggravating, feeling a full bladder and sitting on the toilet to empty out, only to spend a full five minutes or more running water in the sink, leaning forward, visualizing shooting the rapids on the Colorado River, and pressing on my stomach to get the stream going.
“You might want to see the urologist and learn how to self-cath,” my neuro suggested back in April. I felt this pronouncement as the cold blade of inevitability, the compromise I must make to stay on Ampyra. I was going to keep denying that my bladder has turned neurogenic as a drug side effect, but darn it, I really need to empty my bladder before my kidneys get permanently damaged from urinary retention. There simply is no debating this any longer. I cannot have it both ways; I cannot have stronger legs and normal bladder function.
There have been other compromises in the past, but in retrospect, those I seemed to have tackled quickly and with less of a struggle. For example, many years ago I stopped Copaxone and started Rebif. But the Rebif shots made me scream in pain, unlike Copaxone, despite icing and taking a pain reliever prior to injecting. I dropped that sucker after just a few months—only to go on to Tysabri infusions. But I was a horrifically difficult puncture, having tiny veins that liked to hide. I lasted a whole year on Tysabri before chucking that one, too. The risk of PML wasn’t as much of a consideration as having to spend two hours finding a vein before the infusion was even started. I went without any disease-modifying drugs for the next two years. The trade-off was a slightly higher risk of relapse against the uncomfortable side effects and health risks of a DMD, but nothing happened during those years. I settled on Tecfidera in 2013, the side effects of which are very minor compared to those previous drugs.
I’ll soon be faced with more trade-offs. My oral baclofen dose is nearing its maximum as my spasticity increases and my body’s tolerance of the drug increases along with it, requiring a higher and higher dose. I have refused the intrathecal baclofen pump option for some good reasons and will continue to refuse it. I think I can still pull a rabbit out of my hat on that one. Some trade-offs are so against my lifestyle, my quality of life, that they are unacceptable even with all the proposed benefits.
Some of this and some of that. You never really know what you will do until you have to make a choice.
How many specialists did you see before finding "The One"?