Category: Oh No!

Some of you have reached out in recent weeks with words of encouragement or to ask what’s going on, and I wanted to provide a quick update and also say thanks. Here’s where things stand:

• After nearly two years of strange health problems and many unhelpful tests and appointments, my PCP referred me to a neurologist. That doctor then referred me to a movement disorder specialist (MDS), another type of neurologist, believing I had cervical dystonia.

• In February, the MDS confirmed that diagnosis and also found I was generally dystonic. I’m an all-around shaky sonofab*tch, and she noted other movement disorder symptoms that are mentioned here.

• The most effective treatment for dystonia is Botox. Today was my first round of neck injections, with a bonus shot or two in my shoulder. I’m not fearful of needles, as you might expect of someone who injects immunosuppressants 78 times per year, so that was uneventful, though I’m concerned my neck might start behaving like a Real Housewife now that it’s been Botoxed. If the injections work, she’ll administer them quarterly.

• This week the MDS additionally suggested I try carbidopa/levodopa, also known as Sinemet. This can help with some forms of dystonia, though it is more widely known for treating Parkinson’s, which has its own special relationship with dystonia. I agreed to try it. That experiment begins in the coming days and I’m having a brain MRI next week. My symptoms are largely left-sided and that can help rule out a stroke, which is unlikely at my age.

• 3/20 update, Botox: It took the Botox a week to settle, just as the doctor predicted. My neck is no longer stuck in one place, and any fears that it would turn into Luann de Lesseps were misplaced. Unfortunately, my shoulder remains a work in progress. It was hard to open my mouth for a couple days post-Botox, which dampens whatever interest I might’ve had in attempting to treat my oromandibular (jaw and mouth) dystonia with injections.

• 3/20 update, MRI: My brain MRI was normal, as the neurologist expected; it was a formality to verify there was no evidence of stroke or multiple sclerosis. There was also a neck MRI, which showed arthritic damage and several “mildly bulging discs” that might exacerbate my arm and shoulder problems.

• 3/20 update, Levodopa: I’m taking carbidopa/levodopa to see if my motor symptoms respond to it. I’m not sure what upset my wife more, that I was prescribed this medication or that I’ve had a positive response to it, but so far it has gone well. If that continues, it raises the question of whether I have dopamine-responsive dystonia (DRD), which seems unlikely for a couple reasons, or if my dystonia is a feature of Young Onset Parkinson’s Disease (YOPD). Since I have some symptoms of the latter, going back to as early as 2013, we’re more concerned about that possibility right now.

How do I feel about this? I don’t know. It seems pointless to get worked up over anything when we’re uncertain whether the dystonia will worsen, or if it’s a standalone issue or harbinger of something else. My wife is wired differently and this has been hard on her—she was unmoved by my idea to review Awakenings (streaming free at Amazon!) once I’ve taken levodopa for a few weeks.

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The brain is my wife’s favorite organ, one she studied for years even prior to medical school, and she speaks of it with the kind of passion and reverence I normally reserve for Judith Light. When we met, she could tell I was neurologically “different,” which means less than you might think. “Different” brains, like bad childhoods and pretty much everything else that’s currently having a prolonged (and occasionally irksome) cultural moment, are a dime a dozen. Possessing one makes you no more virtuous or villainous than anyone else, no matter what the Internet tells us. Heck, most of you reading this right now probably have unusual brains—who else enjoys Afterschool Specials that much?!

Nevertheless, in the early days of befriending and then dating a physician, I often felt strangely vulnerable. It reminded me of how tennis players describe the brutal solitude of the court in exposing their deficiencies. (Pete Sampras, a master chronicler of this, said “It’s one-on-one out there, man. There ain’t no hiding. I can’t pass the ball.”) Before our first date, I laid my cards on the table: the lifelong history of IBD, the surgeries, the related conditions. And, less importantly, a former partner’s insistence, equal parts bitter and rueful, that I was autistic and therefore at least partially defective.

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Here’s the obligatory follow-up to the ongoing saga of my body not being a wonderland: I saw the neurologist at the movement disorder clinic this week, which was earlier than expected. She confirmed the diagnosis of cervical dystonia and threw in a curveball that hit me right in the face (on account of the clumsiness) by asserting that I belong to a smaller subset of patients whose dystonia extends to other locations. It’s not just confined to my neck.

To be clear, I’m not shaky on the order of Katharine Hepburn… yet. But who knows what the future holds, because she explained that, for some of us, things “progress.” This isn’t what one expects to hear at the culmination of a long strange trip with origins in their underarm, of all places. Admittedly, I’ve not been a model of great health during my brief tenure on this planet, but my biggest problems have reliably involved bodily systems light years away from the brain.

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This spring, during lockdown, I was dropped off in an emergency room parking lot by my wife. It was pitch-black outside, cold, raining. Visitors weren’t permitted at the hospital, so she couldn’t join me. Cars weren’t allowed near the ER entrance. She later told me she had sobbed behind the wheel that night, watching me totter toward nurses huddled near a tent, worried I’d fall over. It wasn’t the first time she’d dragged me there and probably won’t be the last, but it was the only time she had to wait for phone calls to know what was happening.

The good news: I didn’t have COVID-19 and we never suspected I did. (We were, in all likelihood, repeatedly exposed to the virus earlier in the year. We’d each gotten sick then, with very different symptoms. By the time antibody testing was available to us, it was too late to be useful.) My complaint was severe abdominal pain and nausea, which we correctly assumed was related to my Crohn’s disease. My immune system’s been attacking my intestines for most of my life, which I’m fairly certain accounts for most of my baseline crankiness.

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