Sit Down Before Reading: A Memoir by Dave Bexfield
Tragically, because a diagnosis of MS is so fuzzy, misdiagnoses happen. A lot. A disturbing amount of a lot. Recent studies conducted at various MS centers in the United States and around the world discovered the rate of misdiagnosis to be between 15 and 20 percent. Indeed, in one survey, more than 95 percent of neurologists reported evaluating “one or more patients misdiagnosed with MS in the previous 12 months.” Even “clinically definite” cases of MS are in no way definite. They can be just wrong. And often it’s not just a little wrong. One study [The contemporary spectrum of multiple sclerosis misdiagnosis | Neurology] found that on average it took over four years to discover the error—36 percent 10 years or longer—and most patients (70 percent) had initiated completely unnecessary disease-modifying therapy, powerful drugs to modulate and suppress the immune system.
To put all of this into perspective, your basic odds of getting misdiagnosed with MS is on par with rolling a six on a single die. Not a Yahtzee. Not two of a kind. Just one number on a standard six-sided die, not even enough bones to play craps at a casino or pass Go and collect $200.
There are an estimated 2.8 million people living with multiple sclerosis. Officially. Unofficially? Based on scientifically sound research, over two million have the disease and more than a half million are completely oblivious that they don’t, most faithfully taking obscenely expensive drugs all while clutching onto mistaken hopes that their medications are helping. Worse, “misdiagnosed patients are often exposed to prolonged unnecessary health care risks and morbidity.” And that doesn’t begin to address the added mental trauma, medical expenses, and employment issues that go hand-in-hand with a misdiagnosis along with its effect on myriad life choices, from entering marriage (or divorce), where to live, whether to have children, continue friendships, evaluate career choices, everything.
The correct diagnoses cited in countless studies are as variable as MS presentations: migraine, fibromyalgia, cerebral small vessel disease, psychological disorders, neuromyelitis optica spectrum disorders, disorders of the vertebrae, neuropathy, functional neurological disorder to name a few. Meanwhile, Lyme disease, while noted in countless news articles as a potential mimic of MS, rarely is fingered as a misdiagnosis culprit in medical research.
The Devil Vanquished?
I have a general rule about waking up Laura when she is sound asleep. Don’t. Rarely has anything good come about when I’ve done that. Like that one time at 4:21 a.m. ten years ago when I rolled over to my wife, at that moment an angel resting on a bed of clouds, and cooed into her ear something to the effect of “Honey, there is a chance I am having a heart attack.”
That’s perhaps the last thing you want to say to your spouse at 4:21 in the morning. Those heavenly sleepy clouds dissipated in a hurry and my angel was now propped up in bed with frazzled hair, big eyes, and a suspicious crooked eyebrow. But I felt I really didn’t have a choice. I woke up ten minutes earlier with uncomfortable chest pain and difficulty breathing. So naturally I did the first thing one always does in a potential medical crisis. I Googled it. And what did Google tell me? Stop Googling, you idiot, and call 911.
So that’s how we ended up in the ER, ultimately without a clear resolution, other than I definitely was not having a heart attack. Maybe I hurt myself exercising? I’ve been injuring myself exercising in odd ways for years it seems. How does one hurt a middle toe playing tennis? Super Dave to test the bounds of dorkfulness!
This latest angelic rousting, in the early morning hours of November 10, 2021, was similarly mandatory to my maybe-I’m-having-a-heart-attack not heart attack. Only this time I didn’t coo. There was direct, purposeful urgency in my 1:30 a.m. voice. I feared I didn’t have a choice. “We have to talk. Now. Because it’s me. I’m back. The man you married is back.”
By any measure, it appeared taking doxycycline was having an impact on my not-yet-confirmed Lyme disease. A noticeable impact. My swollen feet had returned to normal, I just felt stronger, and now my head seemed to be screwed on properly. However, it immediately dawned on me in that predawn hour that I sounded plumb crazy, and my actions crazier. Laura knows the level of insanity that that one must muster to purposefully wake her from a deep sleep. I had to prove to her, quickly, that the marbles had returned.
“So, you know how our neighbor randomly, out-of-the-blue, invited you to go on a morning walk during the workweek?” I was about to implicate myself in one of my conspiracy plots, and Crazy Dave (not me at the moment) had involved two of our closest friends. “Yeah, I sorta called her husband the other day. At his law office. For legal advice about suing people responsible for my misdiagnosis. Like, everyone. For a billion dollars.”
Defying the laws of optics, I could see Laura’s eyes roll despite being unable to see jack squat in our darkened room. She had already lectured Crazy Dave about the importance of getting an official diagnosis, the importance of getting on proper treatment, and the importance of leaving our friends alone lest they think I was more than cuckoo for Cocoa Puffs. Which I was.
“I’ve also been hiding things and lying to you, a lot,” I said, laying out more evidence of my crazy to prove I wasn’t crazy. I confessed about my fail-safe friends, the fears of being put in a mental institution, our phone PINs sent overseas, all of it. Or at least most of it. I had been up to my shenanigans for over a month.
“You do realize that I wouldn’t ever put you in a mental institution—that isn’t even done anymore,” she said. “But our PIN number, are you insane!?”
I pondered correcting Laura. It’s just PIN, not PIN number, because PIN stands for personal identification number, so if you say PIN number that means Personal Identification Number number, which makes no sense. But because I smartly didn’t correct her, it was further proof that I had regained my sanity.
This Really is Real
By 2 a.m., Laura was getting comfortable believing that I had recovered my mental capacities. The conversation then switched to our lives, our future. I impressed upon her: this is happening, this is really happening.
I tossed the sheets off with all flair of a disabled magician. “I bet I could curl double that right now!” Laura tossed the sheets back on with the efficiency of a coroner and pointed to the clock: 2:35 a.m. Bedtime.
“You remember how in my movie—the one you HATED hated, From the Ashes—you went to our four missed bucket list spots alone, well, except for some small Dave bits?” Of course she didn’t forget. She was still bitter that I even thought about croaking on her watch. “We’re going. Egypt. Netherlands. Argentina, Antarctica.” She let me ramble for the next five minutes about my grand plans once my health improved, waiting patiently for me to take a breath. Eventually I did.
“That all sounds amazing, honey,” Laura said, with a distinct linger on “honey.” That linger meant that a but was coming. Had I missed a destination? Maybe Jordan to see Petra? Tokyo perhaps? I almost forgot about Iceland, fermented shark and dried fish notwithstanding. We enjoy fish, but not fishy fish. I was flummoxed.
“But what I really, really, really want to do?” said Laura, letting the question mark hang long enough for a set of sheets to dry on a clothesline. “Just sit on the couch, do the crossword, and sip on a cocktail. While you make me dinner.”
We both laughed. Hard. I hadn’t made her a dinner solo in forever, one of my talents she fell madly in love with all those years ago. For me to cook for her was a passion until it became a near impossibility. How magical would it be to get that back? She was right, of course. She’s always right. Cook today, travel tomorrow. I was good with that.
Laura was supposed to go on a hike in the foothills with a coworker the following morning, but that wasn’t happening. Nope, no way. Her husband was sane now, but by sunrise he might be boarding the crazy train to conspiracy land. She had to stick around. I was good with that, too.
“This is happening,” I kept saying aloud over and over to our disbelieving ears. “This is really happening.”
The thought of a future without the threatening cloud of multiple sclerosis permanently parked overhead felt like the makings of a comic in The New Yorker begging for a proper caption. Surreal. I didn’t want the moment to end.
“I just realized something else,” I said. “When we were working out earlier, I was frustrated that the dumbbells in my workout—the 3 and 4 pounders I’d been using for the past year for lifting—were too light. So I doubled them up. And they were still too light.”
I tossed the sheets off with all flair of a disabled magician. “I bet I could curl double that right now!” Laura tossed the sheets back on with the efficiency of a coroner and pointed to the clock: 2:35 a.m. Bedtime. First thing tomorrow we would do the test. She was right. She’s always right.
Rewind for Regrets
My chessboard was off, but my brain was in full rewind, retracing my steps to that fateful MS diagnosis. What could I have done differently? What should I have done differently? The floodwaters of regrets started to rise alarmingly as seemingly harmless decisions irretrievably changed the trajectory of my life.
Should I have gone to Mayo for a third opinion? The New Mexico doctors and neurologists who examined me, including the state’s leading MS specialist, were and are not dunderheads. The laboratory results—brain lesions, spine lesions, oligoclonal banding in the spinal fluid, and negative results for other diseases, in particular Lyme—had every finger on every hand pointing to multiple sclerosis. I also essentially boasted a picture-perfect roadmap of supportive diagnostic clinical symptoms that could have served as a case study example of classic MS in med school, all further backing an MS verdict: Lhermitte’s sign (a shock down the spine when you bend your neck downward), the MS hug (tightness in the chest), the Babinski reflex (the big toe swinging up when the sole of the foot is firmly stroked), even heat intolerance. I would have so failed the “hot tub” test.
Without any reason to suspect a zebra, Mayo almost certainly would have found the same horse. The exact same horse. I just would have been thousands of dollars lighter in the wallet. The experts then would have shrugged and said, Sorry, it looks like it was MS after all. Diagnosis: still MS.
In the spring of 2009, six months before I aggressively pursued a stem cell transplant, I had ordered a Lyme disease testing kit from a well-regarded laboratory after my third standard Lyme test came back negative. I was still not convinced I had MS. The problem? Health insurers wouldn’t recognize these particular results, as the lab’s methods were not (and still aren’t) recognized as a legitimate alternative by the CDC. If the results came back positive for Lyme—likely a false positive, critics would have argued—I would have had to go outside the mainstream to pursue treatment for a questionable diagnosis. But once I got accepted into the NIH HSCT trial, I was left holding a pair of dice at a craps table, the stickman impatiently awaiting my wager. Go all-in on Lyme disease and pass on a once-in-a-lifetime, potentially MS-reversing transplant? Or put my chips on the more certain bet, one that might cure my MS or, with all that chemotherapy, might just knock out a tick-borne infection anyway?
Nearly a year after I had requested it, the lab kit still sat in the corner of my study, unused, until we packed our car for the Houston stem cell transplant at MD Anderson. Finally, it was settled. I remember putting the collection bottles, return mailer, and detailed instructions into the garbage.
The only way all of this could have been avoided? At the very beginning, before our September 2004 hike in Old Lyme, Connecticut. Before the fall-feasting, sesame-seed-sized female tick (poppy-seed-sized young nymphs come out in spring and early summer) ever found its blissfully unaware host. Me.
Apply insect repellant and wear long pants, tucking my pant legs into my socks. Be acutely aware not to brush any vegetation; ticks like to hunt for their next meal on the tips of grasses and reeds, their front legs raised skyward, ready to hitch a ride as this short YouTube clip demonstrates.
Then post hike, shower within two hours of leaving the trail. Conduct a detailed full-body tick check afterward: armpits, belly button, ears (and behind the ears), hair, behind the knees, groin. Toss the clothes in a dryer set to high. Ask Laura to investigate the bump on my head instead of plucking at it. Reach out to my doctor about the weird rash on my forehead and report the presence of a tick. Get treatment immediately.
But none of that, of course, happened. And when it didn’t, the die had already been cast. It was inevitable. Inescapable. I was going to get diagnosed with multiple sclerosis. And I was going to stay diagnosed with multiple sclerosis.
Until I wasn’t.
I didn’t need the early morning sun to poke me awake. Breakfast could wait. Coffee could wait. The bathroom could wait. I had weights to lift. For the last six months, my left arm could muster at most 10 curls with 4 lbs., my right only 3 lbs. on a good day, and 10 reps would be a stretch. Laura brought out a 10 lb. dumbbell.
“Heavier,” I said.
She brought out a 15 lb. weight.
She sat a 20 lb. weight in front of me. I could always start lighter, she stressed. At this point she was not only concerned for my health—if I didn’t tear a bicep muscle, I’d inevitably break a toe dropping the cast-iron behemoth—she was rightly questioning my mental aptitude and fitness. Had I slipped back into Crazy Dave?
I shook my head no. I was still me, the marbles still there. To prove it, I revealed to her the precious code words I had established to authenticate my identity to my failsafes: bike and banana. Never mind why I chose bike and banana, I told her, I was mad as a hatter, loopy as a loon, nutty as a fruitcake. Then I wrapped my fingers around the hexagonal dumbbell. Took a breath. And gave it a heave.
**IMPORTANT** Concerned you may be misdiagnosed? Read our FAQs first.
Chapter 12: Roll of the Die
Chapter 15: Jenga (coming 8/23)