Misdiagnosed

by Jody Berger

  Without looking at me, Dr. Wise sat at the desk and opened my electronic file on the computer.

  “Oh, you have MS,” she said, off-handedly.

  “I don’t think so. That’s what Dr. Silver thinks, but I’ve been seeking other opinions from other doctors, and based on the evidence, they don’t believe I have MS.”

  Her posture changed. I watched her spine grow more rigid, her shoulders stiffen. And as she grew taller in her chair, I started to slump.

  Without turning away from the computer, she twisted her head over her shoulder to look at me. I felt like she was trying to remember who I was. And jogging her memory seemed important.

  “I came to see you when I had tingling in my fingers, and you sent me to see Dr. Silver. He ordered an MRI and called to tell me I had MS,” I said.

  Wise was still staring over her shoulder without saying anything. I couldn’t see any recognition in her eyes, no sign that my words were landing, so I continued. “It’s been a nightmare. I wish I never said anything about the tingling.”

  Now, the room—and her over-the-shoulder, birdlike gaze—felt oppressive, and I was becoming scared again. I could feel my shoulders rounding forward and my heart picking up speed.

  Wise turned away again to look at the screen. “Did he discuss treatment options?”

  Didn’t matter what I had said, she was sticking to her talking points. “How are you going to treat it?” implies, without a doubt, that “it” exists.

  I wasn’t sure if I should repeat myself about seeking second opinions, so there was a brief silence.

  To fill it, Wise repeated herself, “Did he discuss treatment options?”

  Sometimes it’s just easier to cave. “Yeah,” I said. “He gave me four one-pagers, and they all look awful.”

  Dr. Wise swung around to face me and suddenly looked an awful lot like my mom. Specifically, she made the face my mom made to tell me I was ungrateful for something.

  “For years,” Dr. Wise said, “MS patients were dying for those drugs.”

  She narrowed her gaze and her nostrils flared as if to drive home the point. “They had no hope, and they were dying for those drugs.”

  I didn’t want to die. Not for drugs. Not for anything. Not yet.

  “Well, I’m not convinced I have MS, so I’m not thinking about the interferons right now.”

  “Well, I don’t know what else could cause these lesions,” she said, closing the computer file. Before I could say anything, she stood and left the room.

  I don’t think she’d seen the MRI—although I didn’t get to ask her—so I didn’t know if she was making assumptions about lesions she had never seen.

  The conversation didn’t seem finished though—she hadn’t answered my question about ordering a thyroid test—so I assumed she was coming back.

  Sitting on the examining table with my feet dangling over the edge, I was grateful that another doctor—one who had read the MRI, Dr. Martin—had other ideas. And, I thought, if Wise doesn’t know what else could cause lesions, maybe she could talk to him or someone else with more information. Either way, for me, one doctor’s ignorance was no reason to take drugs. I sat swinging my feet off the table and listening to the paper crinkle beneath my thighs when a nurse came in and looked startled to see me.

  “What are you doing here?”

  “Waiting for Dr. Wise to come back.”

  “She’s not coming back. Is there something you need?”

  Compassion would be nice, I thought. I’d settle for a bit of kindness.

  I would have asked the nurse to order the test if I thought she could have. I left the hospital and paid out of pocket for the thyroid test and had results sent to Dr. Duncan.

  When I went back to see her to review the results of all the tests, she said my thyroid numbers were well within the normal range.

  The vitamin and nutrient panel was more interesting. I had plenty of B vitamins and not nearly enough D—which was surprising because I’d been basically mainlining both of them for nearly a month now. In antioxidants, I was low on vitamin E and coenzyme Q-10.

  She handed me a stapled set of pages with results from the heavy metal test and as I read through, I saw the range for healthy populations were marked on the bar graph in yellow. The danger zone was, naturally, in red. With lead, I was far in the red, with more than double the acceptable range. On mercury, I had more than seventeen times the range. I kept reading down the list—OK on antimony, whatever that is; fine on barium; no problem on cadmium.

  “What the hell is gadolinium?” I asked before I had time to think.

  “That’s the contrasting agent they use for MRIs,” Duncan said.

  The reference range for healthy people is less than 0.019 micrograms per gram. I had 2.918 micrograms, 153 times the normal amount.

  “If heavy metals cause nerve damage, why would they inject that, knowing from the tingling that something was going on with my nerves?”

  “C’mon,” Duncan said. “What if it had revealed a tumor or something else that was causing your symptoms? You’d have wanted to know about it.”

  “I guess so. Still, no one told me it would stay in my body. No one even told me it was a heavy metal or what the contrasting agent was.”

  Duncan reassured me that we could remove all the metals with chelation. Since the body tucks metals into faraway corners, they are harder to remove than the lesser toxins we eliminate in the usual ways. To excrete the metals, a person has to ingest something that will bind to the metal and pull it out of the system. Cilantro and some algae are natural chelating agents, and there are chemical compounds that do the same job.

  Duncan said heavy metal toxicity could explain the tingling. It sounded more logical than Silver’s theory of the return-of-the-chicken-pox antibodies. It fit with what I’d learned in Canada. And, for sure, heavy metals didn’t belong in my body. Removing them seemed like a reasonable idea.

  She explained that chelation could take a while; she had done it herself and said it was worth it. She suggested I come to her office once a month so her nurse could give me an IV of the chelating agent, and three days of each week, I’d take four Chelex pills, which had natural and chemical chelating agents.

  “Don’t eat any seafood for twenty-four hours before the IV, and don’t take your supplements on the days you take the Chelex—it will just take them all out anyway so it’s a waste,” she said.

  Duncan also suggested I stop eating all gluten, the protein found in many grains, and all dairy products for one month.

  I didn’t ask too many questions but agreed to do it all: eliminate my soothing breads and pastas, get a monthly IV, swallow Chelex pills three days a week and nutritional supplements the other four. While the plan sounded awful in some ways, it seemed infinitely better than the one alternative that still sat heavy at the center of my focus: MS and injections for the rest of my life. And this plan didn’t sound too tricky. I could always tell what food contained gluten and dairy, right? Ingredients are obvious. Or so I thought.

  CHAPTER 9

  Family Ties

  “How ya doing, Jo?”

  My dad calls me Jo most of the time. Sometimes he calls me Curly and occasionally Shorty. My sister and I are just one year apart, and when we were kids, he’d look at us and say, “Now which one of you is Shorty and which one is Curly?”

  I’m not sure what he calls Ellen these days. Mostly, I’m Jo.

  “Pretty good, Dad,” I said.

  He asked what the new doctor had to say, and I told him about the chelation and that she suggested I give up gluten and dairy. I said I was going to, as if it were no big deal, as if I hadn’t started so many days for so many years with a bagel and cream cheese and finished with pasta and Parmesan cheese.

  “I wouldn’t change my diet for any doctor,” my dad said. And it’s true. Doctors mus
t have told him to give up desserts and eat more vegetables until they were blue in the face. It’s got to be a standard part of the diabetes rap. And yet, ten years after his diagnosis, my father would rather adjust medications than alter his diet.

  I told myself I didn’t feel that strongly about food. I liked it, liked eating out, even liked cooking it—I just liked my health more. Food seemed an easy thing to change, and not for any doctor. I was taking vitamins and chelating agents, and avoiding gluten and dairy for me. Just for me.

  Or so I thought. But who knows? Maybe Christopher was right when he said, “Most people do as they’re told.” Maybe I was no different, and my dad was.

  “So, let’s pick a weekend and meet in New York,” he said.

  Once a year, he and I would meet in Manhattan, catch a play and try a new restaurant or go back to old favorites. After a few days, we’d take the train to the suburbs to see my cousins.

  We picked a weekend and decided to reverse the order. We each flew into LaGuardia and made our way to Grand Central to catch a train out of the city. In a leafy green town up the Hudson River, we went to a neighborhood Italian restaurant with my cousin Dawn, her partner Jon and their newly adopted son, Andrei, who had spent the first four years of his life in an orphanage in Russia. No matter, he looked surprisingly like his mom. He and Dawn both had light coloring, dark eyes and round, happy cheeks.

  Someone ordered fried calamari and mozzarella sticks for the table, and I watched as everyone else enjoyed them. For dinner, I ate a simple fish dish with rice and drank a glass of wine. My father ordered a frozen strawberry daiquiri and zoned out as Dawn tried to keep the adult conversation going while teaching Andrei restaurant etiquette.

  “It’s good to stay in your chair while eating,” she said gently, like a patient kindergarten teacher. “Remember? We talked about this.”

  For his part, Andrei seemed happy to stay seated and eat, until eventually he grew bored. From his chair, he started flirting with a girl at the next table. She looked his age and was adopted too, from China. Andrei charmed her for a while and then moved on to flirt with both her parents.

  “It’s amazing,” I said. “He’s only been here, what? Two years? And look at him go. He has such a big vocabulary and no accent.”

  “It hasn’t even been a year,” Jon said, “Dawn has done so much work with him. She worked on language and physical stuff too. When he got here, he couldn’t do anything across the midline.”

  Jon reached his right hand across his body to the left, then the left hand to the right to show me what he meant. “He couldn’t even crawl, and his balance was awful,” he said. “He’d spent most of his time in the orphanage in a high chair, strapped in. He didn’t get to do normal kid stuff.”

  Adoption can be painfully slow, and many times the kids arrive with special challenges. As a child psychologist who teaches developmentally disabled children, Dawn was probably better equipped than most to handle the wait and help a child overcome obstacles. And she was determined to do both. She worked with the adoption agency for years before she and Jon were able to bring Andrei home on a long flight from Moscow.

  Dawn and Jon lived in a light- and plant-filled home on a hilly acre and a half. My father and I stayed overnight, and in the morning, Jon gave me a tour of the property, which was covered with trees, roots, rocks, fallen leaves, bushes and random holes here and there—it all sloped down to a creek. Beautiful, their yard seemed perfect for a kid with an imagination. As Jon and I talked, Andrei ran all over the place. Just three feet tall, give or take, he vaulted himself over logs, shimmied between branches and stopped suddenly to bend to the dirt and examine a bug or something creepy and crawly on the ground. Just as suddenly, he’d pop back up and sprint toward us.

  Later, inside the house, I said to Dawn, “He’s doing great.”

  “Yeah, he’s so amazing,” she said. “When I took him to preschool, they wanted to put him in the class with the developmentally disabled kids. I said no. I didn’t want my kid to be the highest achieving kid in the room.”

  Dawn enrolled him in a private school part-time, and while taking a long maternity leave, she played with him every day, ran drills and designed games to help develop his coordination, language and confidence. When she took him back to the same school district six months later to talk about options for kindergarten, they decided they must have been mistaken; he wasn’t disabled after all and could enroll in the regular kindergarten class.

  Developmental disabilities can last forever, but forever’s a funny thing, I thought, remembering what Christopher had told me: “The only thing they know for certain is that it’s forever. If they diagnosis MS and it goes away, then it must have been a misdiagnosis. It’s bullshit.”

  Dawn and I were standing in the kitchen watching Andrei out the window. “I’m so proud of him,” she said.

  “I’m so proud of you,” I said. And I meant it. She was ridiculously inspiring to me. Andrei came with a label, a diagnosis that promised to limit his future. Dawn ignored it and proved that, with compassion, persistence and training, anything was possible.

  As my father and I rode the train to Manhattan the next day, we couldn’t stop talking about Andrei.

  “He’s a cute little guy, isn’t he?” my dad said. “And his vocabulary is amazing.”

  “I know,” I said. “Dawn and Jon—wow, it’s just really good parenting. It’s great to watch them with him.”

  The train rolled into Manhattan, and as we stepped into Grand Central Station, I felt the familiar surge of energy and anxiety. All those people moving with aggression, determination and indifference made me uneasy. When I lived in New York, I avoided Times Square at all costs and mostly went out on weeknights rather than brave the torrents of people rushing in for a Saturday night in Manhattan. “Weekends are for amateurs,” a friend of mine always said, and, some days, I agreed. Other days, I knew I was the amateur who couldn’t play with the pros.

  My dad, on the other hand, grew up in New York—on the Grand Concourse in the Bronx—and liked staying in the theater district around Times Square. So we dove into the mayhem. We checked into a hotel and caught a play that night. At a restaurant after the theater, I tried to stick with my boring diet. I didn’t eat bread and I didn’t order anything with cheese or pasta. I neglected to think about what was sautéed in butter or dusted with flour. Later, as I brushed my teeth, I wondered whether I should be more vigilant. I felt like I was a “sober” alcoholic who avoided vodka while giving herself a pass on beer and wine.

  I shook it off, figuring trace elements couldn’t hurt. Right?

  Our last morning in New York, we ate forty-two dollars’ worth of eggs, coffee and juice. “Ya gotta love New York hotel prices,” my dad said, as we were heading out. Walking toward Macy’s, we pushed through the crush of people at the confluence of Seventh Avenue and Broadway and continued a block or two before I had to stop.

  “Dad, I don’t feel so good. I need a cup of tea.”

  “OK,” he said, “where would you like to go?”

  I needed air, so we aimed for Bryant Park. We covered the two blocks in silence and I felt exhausted, like my limbs were heavy and I needed to sit down. At the same time, I felt my heart racing, like I’d had too much coffee and not enough food, which wasn’t true. I was shaky and felt utterly alone, in the company of my father and millions of Manhattanites.

  It was a beautiful April morning and people sat on the grass and at the small green tables that surrounded the big lawn behind the library. I ordered a cup of peppermint tea from the kiosk and joined my dad at a table. We sat in silence as I tried to sort out what was happening. The sun felt hot on my arms, and my feet felt like I was standing on ice. Mostly, I felt pressure, a physical force, as if all the people, sirens, car horns and conversations were pushing in on me. I could barely speak as I sat drinking the tea.

  My dad sat and wait
ed, just watching and not saying anything.

  Eventually, to distract myself from this weird crushing sensation, I said, “Dad, what was it like growing up here? I mean with Grandma Ann?”

  “Pretty awful in retrospect.”

  “Was it chaos? I mean, was there food in the fridge?”

  “Oh, yeah,” he said. “She took care of all that. She always kept a job. She worked in the garment industry.”

  “So what was so awful?”

  “She said a lot of shitty things about my dad.”

  My grandpa Yale, my dad’s dad, was one of the kindest men I’d ever met. I didn’t know him long—he died when I was sixteen—but my memories are sweetness and a great Old Country accent.

  When I finished the tea, we walked down to a department store on Thirty-Fourth Street. We picked a time and place to reconvene, and my dad disappeared toward the men’s department. Walking felt good so I made laps in the air-conditioning, circulating through department after department without talking to anyone or stopping to look at anything in particular. Eventually, I found myself in the shoe department and bought a pair of sensible shoes, thinking that could be the answer to the persistent weirdness in my feet—just wear better shoes.

  I flew back to Denver that night and slept a hard eleven hours. I awoke feeling better. The shaky energy and exhaustion were gone, same for the heaviness that crowded me from all sides. My feet, however, still felt cold. I put on my new shoes and decided I hated them.

  A couple weeks later, I went back to Dr. Duncan’s office. I told her about the feet, how they felt cold and tight and as if there were something wrapped around them and strung between my toes. She ordered new tests, an arthritis panel and a vascular ultrasound.

  I paid out of pocket for the tests, and weeks later, when we reviewed the results, she put me on a new batch of supplements. Didn’t take any away, just added to the collection growing on my kitchen counter: letters (vitamins B, D, and E) and bottles filled with glutamine, glutathione and something called IgG 2000 DF. Still, Dr. Duncan believed, the real answers lay in the heavy metal test.