Misdiagnosed Read online

  Copyright © 2014 by Jody Berger

  Cover and internal design © 2014 by Sourcebooks, Inc.

  Cover design by The Book Designers

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  All rights reserved. No part of this book may be reproduced in any form or by any electronic or mechanical means including information storage and retrieval systems—except in the case of brief quotations embodied in critical articles or reviews—without permission in writing from its publisher, Sourcebooks, Inc.

  This book is not intended as a substitute for medical advice from a qualified physician. The intent of this book is to provide accurate general information in regard to the subject matter covered. If medical advice or other expert help is needed, the services of an appropriate medical professional should be sought.

  This book is a memoir. It reflects the author’s present recollections of her experiences over a period of years. Some names and characteristics have been changed, some events have been compressed, and some dialogue has been re-created.

  All brand names and product names used in this book are trademarks, registered trademarks, or trade names of their respective holders. Sourcebooks, Inc., is not associated with any product or vendor in this book.

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  Library of Congress Cataloging-in-Publication Data

  Berger, Jody.

  Misdiagnosed : one woman’s tour of and escape from healthcareland / Jody Berger.

  pages cm

  1. Berger, Jody—Health. 2. Celiac disease—Patients—United States—Biography. 3. Celiac disease—Diagnosis—United States. 4. Medical errors—United States. I. Title.

  RC862.C44B47 2014

  616.3’99—dc23

  2014018555

  Contents

  Front Cover

  Title Page

  Copyright

  Chapter 1: Everything in Moderation

  Chapter 2: Solo at Duo

  Chapter 3: Oh No, Not India

  Chapter 4: Return to Silver

  Chapter 5: Snakes and Ladders

  Chapter 6: Oh So Radical

  Chapter 7: The Trauma of It All

  Chapter 8: Larger Ideas and Lesser Evils

  Chapter 9: Family Ties

  Chapter 10: Peace and Love on Pender Island

  Chapter 11: I Wasn’t Four

  Chapter 12: Amen to That

  Chapter 13: Bikes and Hammers and Nails

  Chapter 14: Toes and Teeth

  Chapter 15: Mexico with Mitra

  Chapter 16: Go Find One

  Chapter 17: Packing Ice in Your Pockets

  Chapter 18: The Baboons Are Brawling

  Chapter 19: A Real Disconnect

  Chapter 20: Experts Say

  Chapter 21: The Bay of Bengal

  Afterword

  The Goods on Gluten

  Suggested Reading

  Acknowledgments

  About the Author

  Back Cover

  CHAPTER 1

  Everything in Moderation

  I had never been in the hospital before. Not for myself, anyway. I’d never broken a bone, had a tonsil removed or been that sick. I’d only gone to the hospital for others. When my sister had her sons, I went, and years later, when a friend had surgery, I brought a plant to set on the windowsill in his sunny, white room.

  The only other time I went to a hospital was when I was on assignment. The newspaper I worked for sent me to Canada in hopes of getting a quote from an injured hockey player. He didn’t want to talk. In case he changed his mind, though, I sat in the waiting room day after day. It didn’t seem so bad. Boring maybe, but not scary.

  This time was different. This trip was supposedly for me, for a test to tell me what was wrong with me. I’d just flown home from Christmas with my cousins and had a few days to collect last-minute things before flying to India on New Year’s Day. I told myself it was no big deal, that going to the hospital and getting an MRI was just another item on my to-do list, right after buying bug spray.

  I circled the hospital buildings and found a spot among the acres and acres of parked cars. Inside, I checked in at 3:15 for a 3:30 p.m. appointment and took an uncomfortable seat outside the Imaging Department. As the clock passed four and then five, I tried not to think about all I had to do. I tried not to think about how badly I wanted to be in India, how much I wanted my life to be different from how it was, and how uncomfortable and ominous the hospital waiting room felt.

  I focused on the New York Times crossword puzzle, blocking out the people with oxygen tanks, walkers and hacking coughs who were crowding in around me. I was actively not looking at the woman who was too large to fit between the armrests when another, slimmer woman appeared before me.

  “Hi, I’m Kara, and I’ll be doing your MRI today.”

  We shook hands and I followed her through double doors into the neon-lit belly of the building. She wore blue scrubs and had her hair pulled back into a sloppy bun. She ushered me into a tiny changing room with a stack of gym lockers on the wall. “Take off your bra but leave your sweater on, and change out of your jeans and into these scrubs. Take off your jewelry and anything metal. You can lock everything in one of these lockers. There’s a restroom next door, and I’ll meet you in the hall right out here.”

  I didn’t say anything. She looked at the clipboard in her hand.

  “Hmmm,” she said, running her finger down the page. “Your doctor ordered the MRI with and without contrast. We don’t normally do contrast and it’s going to cost you a lot if you’re paying out of pocket.”

  I figured she was a doctor because we were in a hospital and she was wearing scrubs. When she looked up from the clipboard, though, she seemed more like a harried cocktail waitress on a busy Friday night. She had a look that said, “Know what you’re having, honey? Cuz I’ve got lots of people waiting on another beer.”

  I didn’t know what to say. I didn’t know what I was having, and I certainly didn’t know what I was paying, even though I had insurance. When I had called to schedule this appointment, I forgot to ask what it would cost, so I asked when I checked in at the front desk. “With your insurance, you’ll pay thirty percent,” the receptionist said. “Thirty percent of what?” I asked.

  She didn’t know. She told me I could call financial services but that they wouldn’t know either. “Maybe you could call tomorrow,” she said, and directed me to the waiting room.

  A couple of hours later and Kara was telling me this was going to cost a lot.

  “What does that mean?” I asked, “How much?” as if price were my primary concern.

  Kara said it depended on the number of cc’s of the dye, which she called by name, as if that meant something to me. (I’ve since learned it’s called gadolinium, and I still have no idea what it cost.) I didn’t know the potential side effects and didn’t think to ask, and she didn’t mention them. The neurologist who ordered the MRI hadn’t mentioned them either. All he said was that I should do this test sooner rather than later.

  “I don’t know,” Kara said. “If you’re paying out of pocket, could be five hundred dollars, maybe more.”

  This didn’t seem like something a doctor would say—“could be five hundred dollars” seemed so imprecise—but I didn’t have much experience with doctors.

  �
�It’s really unusual,” she said. “Unless they’re looking for something specific, we don’t do it with and without contrast.”

  I stared at her. The room was so small and we were standing so close that I could see individual pores on her nose. I stared some more. “Look,” I finally said. “My doctor must have ordered it for a reason,” as if the neurologist were somebody I trusted or even knew well. After the fifteen minutes he spent with me, he was no more “my” doctor than she was.

  “Here’s what we’ll do,” Kara said, softening slightly. “We’ll do it without contrast and if we can’t get a clear picture, we’ll do the contrast.”

  “I’m not coming back,” I said, thinking, I’m in India on Friday, I don’t have time for this.

  She said a radiologist could look at the images while I was on the table, and we could add the contrast then, if necessary. Fine, done. She left the changing room. I took off my pants, stepped into the enormous scrubs, and took off my sweater. I was wearing a bra with stars on it. Wonder Woman.

  I put my sweater back on, locked my stuff in a box, stepped into the hall and sat down on another uncomfortable chair that somewhere some factory snapped together by the thousands. I picked up an old copy of a personal finance magazine and flipped the pages while I cursed myself for all the missteps I must have made rushing headlong into this moment.

  • • •

  The tingling had started six months earlier. It wasn’t painful, just an annoying pins-and-needles in my fingertips. And on the list of things that needed attention in my life, the tingling wasn’t alone. I’d gotten a divorce a year earlier and changed careers the year before that. In the aftermath, my life felt chaotic and confusing. I wanted to slow down, to take time to think and to find answers, so I planned a monthlong sabbatical to begin January 1. And while I was planning the trip to sort out big-picture questions, I tried to get rid of the tingling—which seemed small and unrelated. I saw a chiropractor and a physical therapist. Neither helped. After a while, I figured I should see a physician. At the time, I didn’t have one, because I’d never needed one. And I had the cheapest insurance for the same reason: I’d been healthy my whole life.

  The tingling, however, was persistent, so I selected a primary care physician off of my HMO’s website. I picked her because she had curly hair like me. And I liked her name, Dr. Wise.

  I made an appointment in late November and went to see her. When I explained the tingling, she poked my toes with a two-pronged, forklike thing, asking me to identify one or two prongs without looking. All my toes could count so she shrugged her shoulders and suggested a neurologist. She gave me a name and I booked an appointment.

  In mid-December, I waited in his office, shivering in a paper gown for half an hour before a med student came in and did preliminary tests. The med student, a boyish-looking redhead, was basically the warm-up act, sent to entertain me and to practice his routine. He left and eventually returned with a gray-haired man who did the same tests. The older man said his name was Dr. Silver, and he asked me to follow his finger with my eyes. He hit my knees with a reflex hammer and watched as I did a few of the actual drunk-driving tests: Shut your eyes, put your arms out straight then touch your nose with each first finger. Walk heel to toe, then stand on one foot and look at the sky.

  I could manage all of them, so Silver asked me to walk heel to toe backward. On this, my balance was embarrassingly bad. I’d pulled something in my hip a month earlier and tried to run on it anyway. When that didn’t work, I stopped running for a while to let it rest and have time to heal without seeing a doctor. And by the time I met Silver, the pain was gone, but heel-to-toe walking backward was not in my repertoire. I explained this. He nodded.

  After fifteen minutes, the quiet doctor had seen enough and suggested I get some blood tests and an MRI.

  “I’m going to Seattle tomorrow, then I’m home for two days, and off to India for a month,” I said. “Do I need to do this before I go?”

  He said I should.

  No stranger to last-minute changes, I spent Christmas with my cousins, cut the trip short and caught a flight home at six in the morning. I landed in Denver and found myself driving to one of the hospitals affiliated with my HMO. I gave what the phlebotomist assured me was no more than five tablespoons of blood for five different tests.

  I ran a few errands and drove to another hospital for the 3:30 p.m. appointment. It was still one more item on my to-do list: pick up insect repellent, buy sunscreen, get an MRI, stop the mail.

  After a two-hour wait in the main holding tank, and a quick and uncomfortable conversation with Kara, I was waiting again, this time in the hall outside the MRI room.

  And for the first time since the tingling began, I had to acknowledge what I was feeling: fear.

  Earlier in the day, I was in charge. Sure, my career was off track and my social life was “confused,” but it was my life. I was sure of that, and I knew I wasn’t sick, just slightly off track. I was going to India to sort it out. And after that, I was going to get on with my future.

  That confidence faded as I sat in the waiting room surrounded by sick people, and it vanished completely in the closet with Kara. And as I waited some more, my optimism gave way to something more sinister. At half past five, with no new information, I became certain that I had something awful, irreversible, painful and hard to pronounce. And, as my brain was taking stock of this new situation, this “uh oh, I’m sick” situation, my body had the urge to bolt. I looked around and contemplated grabbing my stuff and sprinting back down the hallway, through the double doors, past the waiting room and out the main door into the cold, dry Colorado night. I saw myself running and holding the enormous blue scrubs at my waist so I didn’t run right out of them.

  Before I could make a move, though, Kara reappeared. She brought me into the darkened room and gave me a bolster to rest my knees and a warm blanket to cover me from toes to chest. Sliding into the tube was a little uncomfortable because it was close, but it wasn’t unbearable. I shut my eyes and concentrated on my breathing.

  The pounding started, and I told myself it didn’t bother me. The MRI machine makes a duh-duh-duh-duh-duh sound like a jackhammer, which is annoying and not unfamiliar. I lived in New York City in the 1990s. Pounding, hammering, sirens—I made a habit of ignoring them all.

  Two minutes of hammering was followed by twenty or thirty seconds of nothing, followed by another minute or two of hammering, and on and on. I focused on my breath and told myself this was no scarier than the dentist’s office. And it wasn’t, until Kara came back into the room.

  “All right, we’re not getting a clear picture of your spine so we have to do the contrast,” she said, as I was sliding out of the MRI tube. She took my hand off my chest, unbent my elbow and started rubbing alcohol on my arm.

  “That doesn’t sound good,” I said. “What do you mean, it’s not a clear picture?” I thought she was telling me she was incompetent, that she hadn’t focused the lens like an amateur photographer might miss a shot with a new camera.

  “We can’t get a clear image. There’s plaque on your spinal cord. Spots that show up. It could be you. It could be MS. I don’t know. I’m not going to diagnose this right now,” she said in a rapid stream of words and sounds.

  Wait, did she just say, “It could be MS?”

  I didn’t know much about multiple sclerosis. Didn’t matter. When Kara said, “It could be MS,” my mind ran ahead to fill in all the blanks and gaps in what I did know. It sprinted past words to images of wheelchairs and dependency and pain.

  “Spots that show up. It could be you. It could be MS. I don’t know.”

  Remembering it now, I think I was supposed to feel my heart race or launch up into my head, accompanied by a panic shot of adrenaline. That’s not what I felt.

  I felt my heart drop down, falling through my back, through the table I was lying on, through the floo
r and into the earth. I felt my heart falling through dark and quiet earth, toward what I didn’t know.

  While my heart went on tour, my brain slowed down enough to take stock of the situation. “Are you a doctor?”

  “No,” she said. “I wish.”

  “Me too. Are you a nurse?”

  “No,” Kara said, and launched into a long story about how she’d been doing this for eighteen years and all the classes she had to take to keep her licensing current.

  While she rambled on, I checked out of her monologue, stopped listening and started to panic again, until I zoned out completely.

  Kara injected dye into my arm and I noticed a slight electric smell, like the air before lightning strikes, or maybe a taste. Suddenly, I was sliding back into the MRI machine. I concentrated on my breath and the knocking began again.

  • • •

  I woke the next day still planning to go to India. The whole Kara incident had been relegated to the place in my mind where I leave bad dreams. I discounted what she said because she was merely a technician and not “my” doctor. And multiple sclerosis didn’t sound right. I ran marathons, galloped horses, kayaked wonderfully cold water. I couldn’t have MS. I knew there was another explanation, so I called Dr. Silver’s office and asked if I could see him that day or the next.

  The nurse, sweet as can be, chuckled. “Oh gosh, no, he’s booked.”

  I explained that I’d just had a mess of blood tests and an MRI, and I was about to leave the country. “How can I get the results?”

  She said she’d call me with the blood tests and let Dr. Silver know I wanted to hear from him.

  “MRI readings,” she said, “take time. The radiologist has to look at the images, write a report and find someone to dictate it so Dr. Silver can call and listen.”

  Only at the end of this elaborate game of telephone could Dr. Silver call me to tell me the results. Or I could check online while I was in India.

  Check online? I was surprised and thrilled. No one would deliver bad news online. And since the nurse was being so nice, I thought she might offer sympathy for my rotten experience in the hospital. I told her about Kara the med tech diagnosing me with MS, and the nurse gasped.