Okay, I give.
This is what I will tell my neurologist in late February. A week ago, I reported an increase in pain, all kinds of pain: Musculoskeletal, neuropathic, existential, do-something-doc-even-if-it’s-a-cyanide-capsule-I’m-not-feeling-too-picky despair.
But that’s not all. Muscle spasticity; need I elaborate? You know the ropes on this one. You sit for a length of time, an hour, perhaps, and when you stand up, your legs suddenly stiffen and you go up on your toes, lurching to and fro like a palsied bantam rooster.
Though I usually set my course straight ahead for the door (the ultimate goal being the kitchen where there is some very strong Starbucks espresso roast), I wind up making a sharp right into a wall of book shelves. The titles that usually cascade off the shelves and onto my bare feet include Jokes and Their Relation to the Unconscious by Sigmund Freud. I won’t even go there.
I’d gotten away with 20 mg a day of baclofen for two years, only doubling up on days when the spasticity worsened—and those days were few and far between. Except for my last two weeks in physical therapy a year ago, when my order ended and I no longer enjoyed the luxury of getting professionally stretched for 30 minutes prior to therapy. It took only one day for my legs to seize up after I stupidly decided to ride the recumbent cycle. Quickly I rose to the level of my incompetence. I stopped showing up for my three days per week workouts with Bill, my retired pro weight-lifter turned P.T. I think Bill would have understood. Or he would have clocked me on the head with a hand weight, I’m not really certain. After all, it wasn’t his idea to ride the recumbent cycle.
Thus began a vicious cycle of trying to do yoga at home, only to spend the next few days with horrific stabbing pain in my groin, pelvis, and thighs. Then I would up the baclofen for a day or two to relieve the pain—and become too weak to hold a yoga pose—for which I would then cut the baclofen to 20 mg for more strength—and wind up injuring myself again. I stopped trying to exercise after that. No pain, no pain. Simple.
Two months ago I noticed that 20 mg of baclofen just wasn’t cutting it anymore. I took 30-40 mg for relief and then decreased the dosage as I usually had, but I couldn’t tolerate the stiffness, pain and cramping that had suddenly spread to my arms and hands.
My spinal issues worsened as well. A month ago, when all the pain was at its peak, my neck pain (compliments of a herniated cervical disc, spurs, and nerve compression) suddenly hit such a high pitch that I began to pace the floors, my mind racing in agony. None of my old tricks worked anymore, not the heating pad, the stretches, not even Vicodin, which just made me nauseous. I almost went to the ER, but I possess a Stoic gene and it demanded that I try one more thing: Go to bed and lie down on that memory foam contour pillow. I did, and after two hours, the pain was quiet enough to let me sleep.
I won’t even go into the mid-back and lumbar pain, nor will I whine about the acute stabbing pain in the groin and pelvis that began to pop in once a month or so the year before last, as though the Pain Police had decided to conduct random visits to make sure nobody in my household was feeling well for too long.
And so we come to the neuro appointment. Wouldn’t you know it, as soon as I made the call for an appointment, I began to feel better. I mentioned this to her at the beginning and joked that I should have called her a month ago and saved myself a lot of pain. She laughed a lot at this, we had a nice little chortle together. “Yes,” she joked back, “give a ring and tell Laurie you’re just calling for the pain relief.” We’re getting off to a good start. Laughter does heal—for a while.
After I read off the litany of symptoms I had suffered since my last visit, she prescribed Lyrica for the neuropathic pain and gave me a new script for baclofen with a larger dosing schedule. As of now, I am so weak from the 60 mg of baclofen and so dizzy from the Lyrica that I walk with my body bent at a 90 degree angle, crashing into furniture and doors, stepping on my little dogs’ paws, and spending most of my day in a chair in front of the computer—which exacerbates my neck pain. I cannot cook an egg without sinking into a squat. I cannot shower without sitting on the faucet to rest.
My neuro also reviewed my willingness to get the intrathecal baclofen pump and recalled that another of her patients had tried titrating up to 100 mg a day of the oral stuff and finally gave in, having been rendered nearly incoherent and quadriplegic in his ability to communicate and to move. Having had the pump surgery, he is now dancing down the streets and provides speech therapy to stutterers, and can’t believe he waited so long. Hm.
She also ordered three MRIs and reviewed my willingness to take Gilenya. I will wait until my MRI results come in before I consider this step, but I’m fairly certain what my decision will be. I can’t ignore the evidence. My symptoms are worse, and if the lesion load has increased, well…
And so, my dear friends (you are indeed dear for sticking with me through all the dense narrative!) I give. I see pump surgery in my future—and a new disease-modifying therapy—and this is the topper—another $3,500 in out-of-pocket expenses for this new benefit year.
The treatments I once reviled as dangerous and invasive I now embrace as my next last resort to battle MS. The enemies of my enemy are my friends. And so I praise them.