The moment the doctor said “multiple sclerosis” Jody Berger couldn’t believe it. The award-winning journalist and marathoner from Boulder was stunned. Then she fought it. In her new memoir, Berger shares why she refused to accept her diagnosis, and how she determined what was really ailing her health.
At 43, Berger saw a doctor about a minor tingling in her hands and feet. One MRI later, she was diagnosed with multiple sclerosis and told to pick a drug and resign herself to a slow death. But, Jody didn't relent. She started asking questions and received countless second opinions. A year and numerous tests later she discovered that “MS” was nothing more than gluten sensitity. A wheelchair didn't await, she just couldn't reach for a sandwich.
Berger's new book is called, “Misdiagnosed: One Women’s Tour of -- and Escape from -- Healthcareland.” In addition to tracing her personal story, she also offers practical tips on how to become your best health advocate by asking doctors the right questions, doing your own research and listening to your body.
Read Chapter One:
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 floor 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.
“I don’t know exactly how that hospital works, but call the main number and ask for the patient advocate and tell them the story. That’s outrageous.”
I hung up and looked at the card Kara had given me. It listed phone numbers for the hospital and the director of imaging. Kara had signed in a big loopy hand with a “Thanks!” and a smiley face.
Goddamn cocktail waitress.
I dialed the department director’s line and left a detailed message. Then, I grabbed my bag and left to get that bug spray I still needed for India.
I was home at noon and beginning to clean my house when Silver called. He said he’d heard I had a rough experience at the imaging center and asked if I could tell him about it. “I’d like to know because I refer people there,” he said.
I told him the story. He apologized and moved on. “There are lesions on your spinal cord and the most likely cause is MS.”
“What? Really? I did not expect you to say that.” I dropped the vacuum I was holding and fell back onto the couch. Then I stared at the ceiling unsure what else to say.
Silver jumped in. “If you want to talk about it, I can stay a little past my last patient today at four thirty.”
“Um, yes, I do,” I said. “I’ll be there at four thirty.”
I hung up and called a friend. She wasn’t home, so I left a message. Then I started vacuuming the couch as if nothing had changed.
Within ten minutes, the tingling had spread from my fingers to my entire body. Every bit of me was screaming and shaking and demanding attention. I couldn’t stand up. I couldn’t sit down. I could hardly do anything other than panic.
I called my friend Jonathan, who is a life coach. Crying, I told him what Silver said. Jonathan had one word: breathe.
I told him I couldn’t and that every part of my body was more than tingling. That it felt like an electrical storm running through my entire body.
“Right,” he said, as if he’d seen this before. “Ten billion cells are wondering who’s in charge over there. You have got to breathe. Breathe, in and out.”
Jonathan listened as I inhaled and exhaled, uncomfortably at first. When I settled into an easier rhythm, he said, “Think about your dog. You know how you can direct her to do something?”
Riley, my Australian shepherd, was already at the friend’s who would watch her while I was in India. I pictured her tilting her head when I asked her to come, and I pictured the politician who had come to the door. The poor guy asked for my vote, and Riley sprung on to the porch and peed on his shoe.
“I guess she listens, maybe, sometimes,” I said. “When it suits her.”
“Jody,” Jonathan said. “Use your mind to calm your body. Tell your body to relax. Tell your body you’re in charge and that this is going to be OK. And breathe.”
I did. Jonathan stayed on the phone for a while, and when we hung up, I sunk back into the couch and stared into space one more time.
I wanted someone bigger than me and stronger than me to tell me this would be OK. I wanted somebody to hold me together and tell me I was OK. I could think of only one person who could say anything in a way I might believe. His name was Bruce, and I’d met him too soon after my divorce to start dating and too soon after his. Yet, we had started. A Canadian with homes in Vancouver, London and Cabo San Lucas, Bruce was a charismatic businessman with a belief in Buddhist teachings.
I knew he was in Mexico and didn’t always answer his phone when he was there. I sent an email saying, “My neurologist wants to see me at four thirty. This can’t be good,” and then I continued cleaning the house.
At four o’clock, my friend Rebecca arrived. I didn’t want to go to Dr. Silver’s alone. I thought I might be overwhelmed and wouldn’t be able to take in all that the doc said. I thought I might not be able to drive.
I got in her car and we drove across town to the hospital. Her car is really clean, I thought. It must be easier when you don’t have a dog.
At Silver’s office, we waited a minute or twelve or twenty—-it’s hard to say—-in the empty waiting room. Last time I was there I had made the mistake of reading Neurology Today, which is filled with stories of horrible neurological diseases and the people who live with them. I mentioned that and Rebecca said, “We won’t do that again.”
A nurse appeared and escorted us into Silver’s office. She took my blood pressure and asked if I wanted anything. I couldn’t think of anything. We waited some more.
Dr. Silver arrived and took a seat in the small room, now crowded with three of us and an examination table.
I have my notes. I have Rebecca’s notes.
Mine are written the way I’d taken notes on any number of press conferences over the years. Or more accurately, the writing—-the actual handwriting—-is the same. Normally sports press conferences start with the coach or the athlete clearing his throat. “This is a great opportunity for our team to regroup,” “I’m looking forward to the upcoming season,” or “I’m resigning to spend more time with my family.” In sports press conferences, people lead with the banal. The first page of notes could usually be tossed with no loss to the story being told.
Not here. In my notes from December 30, the second line reads: my own immune system attacking myself.
Rebecca’s notes are remarkably thorough. She wrote down my blood pressure, 124 over 78, and a haiku--like version of everything Silver said:
Blood brain barrier
Unique to nervous system
Doesn’t go into brain
Would be shown in blood tests
That’s not what this is
And then there’s a line similar to the one I wrote. And it’s just as hideous in either hand: “immune system tries to attack own nervous system—-multiple sclerosis.”
At the time, all I could think was, What the hell? That makes no sense. Even now, when I read it, that’s what I think. Really? The immune system attacks the nervous system? Like they don’t know they’re on the same team? That’s fucked up.
Usually with MS, Silver explained, a person has gotten a virus as a child, and the immune system kicked in and did what it’s supposed to do. It creates lymphocytes that attack the virus. When they’ve done their job, and the virus is dead and gone, the lymphocytes go dormant. Then, for some reason, in some people, something triggers those same lymphocytes to spring back into action decades later. They go to work again, only they have no virus to attack. Instead, they attack the central nervous system.
“We don’t know why,” he said.
As frustrating as his theory was, I had no other thoughts or explanations. I hadn’t done any research, because until that moment, MS didn’t affect me as far as I knew. And the return of some dormant attack cells was the story the doctor was telling, so who was I to question him? He was the authority in the room, calling me Jody while I called him Doctor. He wore the white coat, rattled off medical speak and sat before a collection of framed diplomas on the wall. I sat trembling on a small stool with a note pad on my lap.
“The most common primary diagnosis in young women is MS,” Silver said. “Perhaps it’s tied to women’s genetic makeup.”
“I’m not that young,” I said.
“You’re young enough.”
He added that most often MS is a series of active disease episodes, or “flare--ups,” followed by periods of remission. What happens early, he said, doesn’t predict how the disease goes later. Then he moved to discussing treatment.
Silver was already calling the tingling in my hands “a flare--up,” as though there were no question the cause was MS. The way to treat it, he said, was with a short pulse of steroids to suppress the immune system.
“I can’t suppress my immune system and go to a third--world country.”
“Well, it’s not ideal, but I’m a doctor and we work to keep people going in their lives. This trip is part of your life. Let’s talk about it, about where you’re going and what the risk factors are.”
I was flying into Chennai, a city of five million people in the southern Indian state of Tamil Nadu. I was to spend a few days there, tour a few temples and drive to the coast for ten days at the Quiet Healing Center for a yoga retreat.
“Again, it’s not my first choice, but you’re not going to be in any of the big cities so the risk is lower,” Silver said. I didn’t question whether a city of five million counted as big before he launched into possible side effects of the high dose of steroids. Upset stomach, anxiety, bloating, sleeplessness and others.
He said doctors used to prescribe long doses of steroids for MS, but now they hit it hard for a short time and a quick taper. He talked about 1,000 milligrams a day for four days. Although, he said, statistically that’s more likely to cause the side effects.
Because I was about to catch a plane, he prescribed 500 milligrams a day for four days and a longer taper. Then he went through the side effects again. When he got to the sleeplessness part, he flipped to a new page on his pad and, without looking up, started scribbling. “I can prescribe a sleeping pill,” he said.
The sleeping pill scared me more than the steroids did. “Hang on,” I said. “I don’t even take aspirin.”
I had stopped taking over--the--counter medications ten years earlier. One spring the pollen counts reached record highs and my nose ran constantly, my eyes watered and my throat itched. I tried several allergy pills and felt like I was auditioning for the Seven Dwarfs. I went from Sneezy to Sleepy, to Dopey, to Grouchy—-or is it Grumpy? Years before that, nighttime cold medications kept me awake for three days, and something that promised to settle my stomach left me so disinterested in food that I skipped five meals. Finally, with the allergy meds, I realized that over--the--counter drugs were not engineered for me. I never tried them again.
My mistrust was even more pronounced with sleeping pills. When I lived in New York, everyone I knew took Ambien or some variation to fall asleep at night. And that’s one of the reasons I left. I didn’t want to live in a city where medication was mandatory. I didn’t think I could. And back in my arrogant thirty--third year, sleeping pills proved that life was out of balance—-for others, those folks who took Ambien. Now, ten years later, it seemed my life was the one that was hopelessly and irretrievably out of balance.
Silver didn’t seem to hear me. “Really,” I repeated. “I don’t take aspirin.”
“Neither do I,” he said, and I believed him. He said it almost apologetically, and he looked the type to eat well, abstain from drugs and alcohol, and run a tidy five miles every morning or play squash with his old boarding--school buddies.
“Statistically,” he said, “most people have no reaction. If you were going to have one, it would happen in the first forty--eight hours. It’s tight but,” he looked at his watch, “go to the pharmacy now and we have almost forty--eight hours until you board the flight.”
Rebecca and I looked at the clock: five thirty. The pharmacy closed at six. My flight left Denver International Airport forty--one hours later, at 10:30 a.m. on January 1.
Silver wrote three prescriptions: one for Ambien and two for Prednisone. I still have the Ambien.
Rebecca had one more question: “So, is there anything she shouldn’t do?”
“I wouldn’t do crystal meth,” Silver said so evenly that a moment passed before we registered the joke.
Rebecca forged ahead: “It’s New Year’s tomorrow. Can she have a drink?”
Silver said sure, everything in moderation.
Reprinted from Misdiagnosed: One Woman's Tour of and Escape from Healthcareland by Jody Berger, Copyright © 2014 by Sourcebooks, Inc.