Misdiagnosed

by Jody Berger

  “I want you to focus on how resilient and redundant the human neurological system is,” she started.

  Now I understood why the energy had changed between the interview and the exam. I understood why I waited so long in the exam room. While I changed and waited, she had looked at the MRI.

  “Oh, fuck,” I said. “Let’s cut to the chase here. You think I have MS, don’t you?”

  “Well,” she said, “this is a classic MS MRI. Sit down, let me show you what we’re looking at.”

  She started with a contrast image of my cervical spine, where she pointed out how the vertebrae in my neck were small and close together. “You have degenerative disc disease,” she said evenly—as if this were no big deal and not a completely new disease for me, one that every other expert failed to mention. She didn’t linger on that and pointed out the white spots in the spinal cord itself. “Look, here’s one, two,” pointing at the screen with her pen. “Three, four, five, six…It’s quite a bit of inflammation.”

  Dr. Lee explained that the image we were looking at was a slice of my spinal cord. She took me through the images of my brain too, slice after slice, and pointed out a pair of white spots there too.

  I said, “All right, so there are lesions. How do we make them go away?”

  She smiled and didn’t answer.

  “Well, do lesions come and go?” I asked.

  “Yeah, they do go away,” she said and drifted off, as if this weren’t a thought worth finishing.

  Anxiety was rising in my chest. My feet were sweating in their ugly Ugg boots.

  “So if you MRI’ed a hundred people at random,” I asked, “I mean, if you pulled a hundred people out of the parking lot at Safeway and MRI’ed their heads, how many of them would have lesions?”

  “There are some asymptomatic lesions,” she said, “and we can talk about that later.”

  But we didn’t talk about that. Not then and not later. Instead of following that train of thought, instead of answering my question, she turned to me and said, “If you need to cry or yell, go ahead. You can.”

  And at that moment, I did need to cry. And not just because I suddenly was back to square one, thinking I was going to die of MS. That was only part of it. I feared the disease, but mostly I started bawling because I couldn’t hold it back anymore. I was frustrated from not being heard, not having my questions answered, and being told I was damaged.

  But I also suddenly didn’t have it in me to say one more time, “What the hell? What about those hundred people at Safeway? What about the asymptomatic lesions? What about my GI tract being the weak link? Or the nutritional deficiencies or trauma or anything any of the other doctors said? Or what about what you said before you looked at the stupid MRI?”

  Exhausted from what seemed a lifetime of trying to convince someone that I was fine and healthy and important enough to be heard, I could only sob.

  Dr. Lee waited. And the more I cried, the more patiently she waited. Until she finally said, “Dr. Silver likely didn’t return your calls or answer your emails because he hasn’t done his own work, he hasn’t learned to sit with his own pain so he wasn’t comfortable sitting with yours. Few doctors do the work.”

  As my breathing slowly returned to normal, Dr. Lee told me she was a Buddhist, that she had a great teacher, that she was trained to deal with what is.

  I listened. I liked talking about Buddhist philosophy.

  “What Dr. Silver told you about chicken pox, that doesn’t make sense,” Dr. Lee said, back in her tooth fairy voice. “I think you have leaky gut syndrome, which means food stays in your digestive tract too long without getting broken down.”

  When food doesn’t get broken down, she explained, pieces that are too big eventually slip through the intestinal wall into the bloodstream and wreak havoc. She said my body couldn’t recognize these larger particles as self, so my immune system attacked them as invaders. The immune system created an inflammatory response—which is its job—but ultimately the immune system went too far and crossed the blood-brain barrier into my central nervous system.

  This scenario sounded plausible and seemed to match Dr. Desai’s theory. Except Dr. Lee wasn’t going to say, “You’re not far from optimal health.”

  She suggested I change my diet. “I’m sure Dr. Desai has talked to you about that,” she said. “And you should go on interferon drugs.”

  Immediately, reflexively, I started crying again.

  When I could talk, I said, “Wait a minute, I’ve only ever had the tingling in my fingertips and the weird sensation in my feet. You didn’t find anything in the exam so couldn’t the tingling have been an ergonomic thing? I was sitting at a laptop all day with my arms like this,” I rounded my back and held my hands on some imaginary Barbie laptop, “and that tingling went away when I started stretching, taking vitamins and got a new keyboard.”

  “I think the tingling in your fingers could have been ergonomic, but the toes, that’s MS,” she said.

  I stared in silence, unclear how to untangle or articulate my disbelief.

  “I’m not an MS expert,” she said. “There are three at the university hospital.”

  She spun around back to her laptop, with her back to me, and looked at the hospital’s website. She went through each doctor, told me that each was very brilliant and described their personalities.

  “I don’t want to take interferons,” I said. “Silver suggested them too and when I looked into them, they all sounded awful.”

  “I would take them,” she said. “I would if I were you.”

  She had no trouble telling me what she would do in my condition, mostly because she was not in my condition, which at the moment was exhausted, frustrated, scared and—on top of all that—feeling physically strong and flexible. The only interesting thing she discovered during the physical exam was that I could balance longer on my right toe than left. I can throw a ball farther with my right arm too, but who cares? No one would argue that’s a sign of MS.

  “I leave for Borneo next week,” Dr. Lee said. “We can reconvene when I return. Oh, wait you said you’re leaving the country too. Are you going to Kenya?”

  I nodded. “On Monday.”

  “Heat is not great for MS patients,” Dr. Lee said, frowning. And just like Silver, she went into certainty mode, talking about MS patients as if she had no doubt that I was one. “I know you can’t stay out of the heat there but try to manage it. Put ice in your pockets to stay cool.”

  “I’m traveling with a nomadic goat-herding tribe,” I said. “No electricity and no running water. Ice will be difficult.”

  This tooth fairy was persistent. “Go to Costco or someplace and get a battery-operated fan to keep with you.”

  I looked at her like she was from Pluto. She had traveled off to this strange planet where a year of feeling OK and a perfect physical exam matters less than one MRI taken at one moment in time one year ago. Even though her certainty scared me, I had come too far over this past year to let someone else bully me into believing this diagnosis on their word alone. At the same time, I still wanted to understand what she was saying.

  “Hang on,” I said. “What do you mean the heat is bad for people with MS?”

  And now Dr. Lee looked at me like I was speaking another language.

  “I mean,” I continued, “if you’re talking about discomfort, I can live with discomfort. Or are you talking about something else?”

  “Well,” she said, and wrinkled her nose like something smelled. “The heat can cause problems. It can exacerbate symptoms or cause new ones.”

  Hot tubs, in fact, used to be the primary means of diagnosis. Prior to the advent of MRI machines, doctors tossed patients in a hot tub. If their symptoms grew worse, the diagnosis was MS.

  “You’ll probably be OK,” she said. “But find a battery-operated fan.”

  CHAPTE
R 18

  The Baboons Are Brawling

  Lisa picked me up around six for dinner. My eyes were puffy and red, and she wasn’t surprised. Earlier, on the phone, I’d already started crying.

  “This was supposed to be like my graduation dinner,” I said, continuing where we left off. Normally, I’d try to stop myself but Lisa and I met in kindergarten. There’s comfort and safety in an old friendship, and license to be a little kid. “The doctor was supposed to clear me of this whole nightmare and now, I don’t know, I mean, she thinks I have MS and that going to Africa could make it worse.”

  Lisa’s a thoughtful listener. I told her that Dr. Lee and I talked for two hours and that the conversation seemed to go well. I told Lisa about the physical exam and that nothing was unusual except that I could balance longer on one foot than the other.

  “Standing up on the ball of your foot?” Lisa asked. “I probably couldn’t pass that test either.” A triathlete who mountain bikes rough terrain all summer and skis Colorado backcountry all winter, Lisa’s the best athlete I know. One time, careening down a two-lane highway on a road bike near Durango, she saw a small blur running into her path. As she got closer, she realized it was a bear that she couldn’t avoid. She careened off his shoulder, rode out the skid and continued on, leaving a stunned bear to scramble back into the woods while she peddled home. If Lisa can’t do something, I figure it can’t be done.

  “The whole vibe changed when Dr. Lee came into the exam room,” I said. “She’d looked at the MRI and then everything was different. The open-ended questions were gone and she was on a quest for evidence of MS.

  “She told me to take the drugs,” I said.

  “You know,” Lisa said as she drove toward our favorite divey Thai restaurant. “It doesn’t surprise me that two doctors with the same training would analyze the same data in the same way.”

  “Yeah?” I said, eager to hear more on this line of thought.

  “They’re both trained to read an MRI the same way, and you showed her the same MRI,” Lisa said. “She’s going to see the same thing he did. I’m not sure you have any more information now than you had before.”

  “Huh,” I said, unable to say anymore while that sunk in. We drove in silence, parked and found a table in the tiny joint. We ordered spicier food than I’d have ordered on my own and got back to talking about my day.

  “I’m just feeling so shitty about the whole thing,” I said. “I mean why did I set up another neurology appointment just days before another big trip? How stupid was that?”

  “It wasn’t stupid,” Lisa said. “You’re going to take off Monday and have an amazing time and forget all about this.”

  “I don’t know, Dr. Lee said the heat could make things worse.”

  “If you had MS, that may be true,” Lisa said. “But there are no real signs of it, right? You’re not feeling bad now, are you? What do think will get worse? And you’ve been to Mexico a half dozen times since the first dude told you the MRI meant MS and nothing happened on any of those trips.”

  “You’re right. I have been in the heat a bunch.”

  In addition to being a skilled outdoor athlete, Lisa’s a world-class adventurer—she served in the Peace Corps in Guatemala; biked alone through Vietnam, Cambodia and Laos; and toured Central America, South America and Europe. For an entire year in her twenties, she was a full-time traveler. She bought an around-the-world airline ticket and explored, day after day, month after month, with no agenda other than to enjoy and experience the world.

  I knew what she would do if she were me: go to Africa.

  No question, Lisa would get on a plane without a second thought. She’s a good friend. She’s fearless. I’d always wanted to be like her. I decided it was now time to do so.

  The next morning, I woke up, walked my dog, stretched and sat down to meditate. When I finished, I brought my hands together in prayer and made a mental list of all the things that felt like a blessing. “I’m grateful for this light, this love, this life, this mind, this body, all the healing I’ve done, all the teachings and all my teachers, in this and every present moment.”

  Lisa definitely ranked high on the list of teachers. Bruce too.

  As I made breakfast, I gave him a call and left a message. He emailed a few hours later to say he was sorry to hear the appointment didn’t go well and that he had more bad news. He couldn’t make it to Nairobi. He wasn’t feeling well and didn’t have it in him to fly that far.

  I wanted to cry. I wasn’t surprised, but I was crushed.

  I ate breakfast; pulled on a jacket, hat and gloves; and rounded up Riley for her second walk of the still-new day. We got as far as the Platte River Trail, about fifteen minutes away, when I wanted to cry again. I contemplated calling Lisa but stopped myself. She had done her share of emotional heavy lifting with me the night before.

  I walked a little while longer and called my dad.

  “OK,” he said. “Tell me what happened.”

  I told him about the appointment and Lisa’s idea about doctors with the same training reaching the same conclusion.

  “I think she’s right. You’ve been feeling really good and what you did learn yesterday is that on a physical exam, there were no signs of MS,” my dad said. “Focus on that.”

  “So I should go, right Dad?”

  He didn’t hesitate and, for a man who considers riding in a compact car “roughing it,” he was overwhelmingly in favor of Africa.

  “Go,” he said. “Go and enjoy yourself and in the fullness of time, a more accurate diagnosis will be found.”

  I love my dad.

  I spent the rest of the day packing the usual suspects—shorts, T-shirts and sunblock—into a backpack alongside a water purifier and big bags of nuts, seeds and protein bars, just in case there wasn’t much to eat or anything safe to drink.

  Monday afternoon, I boarded a flight from Denver to Heathrow, where I drank tea in a restaurant and wrote notes in my journal. I wrote about the doctor’s appointment and my conversation with Lisa. And about the nonconversation with Bruce. Ultimately, though, I wrote about me and what my body was saying. “I believe my body can heal,” I wrote. I still had a nagging feeling that something wasn’t quite right and a deep-seated belief that it didn’t have to be permanent.

  Hours later, I boarded a flight to Nairobi.

  Michelle, my yoga friend, had flown in a few days earlier, so she and her Samburu buddy, Lepikayo, picked me up at the airport. Five nine, he was stocky and dressed like an American in long, baggy jean shorts, a Colorado State University T-shirt and a long chain with a gold ram’s head hanging around his neck. His skin was reddish brown, not the blue black I’d expected. His teeth where shiny and white, and he had a gap-toothed smile on the lower jaw.

  Lepikayo said hello and threw my luggage in the back of the car. We pulled out of the airport, drove through Nairobi traffic and smog, and headed north for seven sweaty hours over emptier and emptier, bumpier and bumpier, roads. In the late afternoon, we arrived at Samburu National Reserve, home to Elsa and her cubs from Born Free.

  Inside the park, we immediately saw a family of elephants. Enormous and majestic, they stood in clumps—two over there, three over there, and another four or five a bit further behind. All standing in the big, open space, bathed in the late afternoon light, the elephants somehow made my jet lag disappear. Wide awake, I pressed my nose to the window like a little kid.

  “There’s a baby,” Lepikayo yelled and pointed the forty-year-old Range Rover in that direction. As we got closer to the biggest clump of elephants, we could see a little one that stood no taller than the other ones’ armpits. “It can’t be more than a couple of days old,” Lepikayo said, putting the car in park.

  As we sat staring and oohing and aahing, the elephants started lumbering toward us. Swinging their trunks and slogging their mighty feet forward one at a t
ime, they moved with deceptive speed. Quickly, they were close enough that we could see their eyes and the detailed outline of their ears.

  Several of the animals moved between us and the little one. The biggest elephant covered the most ground, coming from way back, behind the pack, a hundred yards away to plant himself within forty feet of us. He stopped and stared and spread his big ears out to either side as if to say, “I’m even bigger than you think. Back up.”

  We snapped a few photos and decided to leave the family in peace. We turned around and continued through the open space, with the sun moving lower in the sky to our left. We saw a trio of giraffes eating from the tops of the trees, not ten feet from our window, and a handful of zebras grazing in the tall grass. We watched antelopes and impalas bounding about, and we saw one other car, a newer, flashier Range Rover with white faces and fancy cameras poking out of the popped top.

  Eventually, as the light grew dim, we started the search for our campsite. The park had moved it since the last time Lepikayo visited, so the search took some doing. We arrived in the dark, and while Lepikayo negotiated with the guard, I stood near the car with my head tossed back, staring at the sky. It was as dark a sky as I’d ever seen, with more stars than I’d ever seen anywhere. In northern Michigan, where there’s next to no light pollution, I’d seen brilliant displays of sparkling lights, but this African night was another order of magnitude.

  Millions and millions of shiny, twinkling white spots splattered across the dark sky, held tight by the frothy white stripe of the Milky Way. It was amazing and breathtaking, and as I inhaled the scene, I knew I was about to crash. It had been fifty hours since I’d boarded the flight in Denver. My T-shirt was ripe, and I couldn’t tell if I was hungry. I didn’t feel exhausted—way past that—and I knew I was done for the day.

  The campsite consisted of six tall, green A-frame tents built on wooden platforms. They were set up around a kitchen area with several long tables under a tarp. The outhouse was ten yards away, and we met the night watchman who walked the perimeter with a shotgun each night. If animals came into camp, he was prepared to shoot the sky to scare them away.