Misdiagnosed

by Jody Berger

  And yet, despite all my wishes, despite all the woulda-shoulda-couldas I knew were irrelevant, here I was, sitting in a teeny exam room with a professorial-looking man in a white lab coat. He tilted his head to the side, and his blue eyes looked weary, as if I were a nagging problem to be solved.

  I shook it off and moved to my next question. What about vitamin D? Should we check my levels on that? I’d read it was related to both nerve health and the immune system. And how about vitamin B12? The Mayo Clinic says a deficiency leads to tingling and, if left untreated, other neurological problems.

  I had questions about the probiotics I had started taking to ready my digestive system for whatever I encountered in India.

  Silver agreed to order a vitamin D test and said the probiotics probably wouldn’t hurt. No word on the B12.

  I wanted an answer and yet didn’t push for one. As frustrated as I was, I stayed polite because I thought I needed this guy. I thought he was on my side. I was afraid if I asked the wrong question, he might refuse to answer, or worse, he might answer with something I didn’t want to know. He might dig deeper and find something even worse than MS. I held back on the follow-up questions. He moved to the edge of his chair like he was ready to go, like his time was limited and more valuable than mine. Like his answers were final.

  But I wasn’t done. Even though I was on the verge of tears again, I finally, finally tapped into a bit of muscle memory from my reporting days. I had a lot to ask and a lot to say. I shifted forward in my seat, willing him to sit back in his.

  “Steroids,” I said. “Everything flies faster on them.”

  I told Silver how they busted up my meditation practice, how I couldn’t quiet my monkey mind no matter what. I told him how the night before I’d had a craving for a spinach salad, only more serious than usual.

  “I told the waitress, ‘I need a spinach salad without bacon and I need it now or someone’s going to get hurt.’”

  For the first time, Silver’s expression changed. He smiled and said that, yes, that happens.

  I asked about the weight loss. I’d lost five pounds in five days. This was not a promising development.

  “Yes,” Silver said, “this happens sometimes.”

  “I don’t understand how this could be MS. If the tingling’s caused by a permanent problem in my brain, why would it come and go so easily? I feel better after getting a massage or practicing yoga.”

  He shook his head. “Yes, of course. Doesn’t matter.”

  Really? Something that makes me feel better doesn’t matter? It matters to me. And yet again, I didn’t pursue it. He had said what he said, with authority, as if that solved that. I pressed on.

  The tingling had grown since I started taking the Prednisone. More intense in my hands, and it also landed in my toes. It seemed like this could be a good sign—the treatment for MS wasn’t working so I probably didn’t have MS. Or jacked up as I was on panic, Prednisone and faith in experts, it seemed equally likely that this was a terrible sign. Could it be that my condition was deteriorating so rapidly that even the drugs weren’t stopping my slide? Remembering Joan’s story, I held my breath. Shit, I thought. I could be blind any moment and I drove here. How will I get home?

  My mind raced through all these questions and concerns in a nanosecond, and yet when I opened my mouth, I asked only why I felt worse on the Prednisone.

  “It could take a while for the drug to work through your system,” Silver said. “It may take a while to get going and it continues in your system for a while, weeks, maybe a month, after you stop taking it. Prednisone behaves differently in different bodies.”

  Why, then, hand it out like candy? I thought. And more important, why did I down those little pills like they were just sugary tablets from a Pez dispenser? And why continue to take them? I took the first handful because I figured Silver prescribed a specific dose for a reason and knew what he was doing. Then, on the info sheet the pharmacist gave me, buried in the small print, I read that failing to take the entire prescription could lead to suicidal tendencies. Having limited experience with doctors and less with drugs, I gave the pharmacist similar respect. I didn’t think she would hand out papers that were meant to be ignored.

  Great, these things are making me lose weight, chew out well-intending waitresses and second-guess every waking thought. What could be worse? If I stop taking them, and contemplate suicide, that would be worse, of course.

  Finally, I asked Silver the biggest question: “Doesn’t the M stand for multiple, in that there have to be multiple episodes over time and space?”

  The doctor shook his head. “Well,” he said, as if sticking to the definition like that was for amateurs. “The tingling has been going on for so long and there are enough lesions on your spinal cord that we can assume they were sequential, one after another, causing the continuous symptom.”

  He said it as he had said everything else: kindly, authoritatively and leaving little room for debate.

  He made another move like he was getting up to go, and I looked back at the pad of paper in my lap. “And don’t we have to rule out everything else?” I asked before he could stand.

  “The blood tests did that,” he said and moved on to talking about medication.

  Silver sailed from “MS is the most likely explanation” to “You have MS—start medication” so swiftly and smoothly that I nearly went with him. He gave me four info sheets on each of the different drug protocols and suggested I read them. “I’ve been doing this for thirty years,” he said. “So I have an opinion, but why don’t you take a look and we’ll discuss the different treatment options.”

  I asked again if he was sure about the diagnosis, and he said he was. “I’ve been doing this for thirty years,” he repeated. “It’s the most common diagnosis I give to women like you.”

  I must have had a question on my face, because he said, “Young and athletic.”

  Haven’t we gone through this already? “I’m not that young.”

  “You’re young enough,” he said once more. “You can get a second opinion if you want. If you go to another doctor within the HMO, we’ll pay for it. If you go outside the network, you’re out of pocket.”

  When he used we, he didn’t include me. We meant his team: the insurance company, his colleagues and him. I was the odd one out. They were “we” and I was diseased.

  “I know I’m overwhelmed right now and I’m going to have many more questions,” I said. “Who do I call?”

  “You call me,” Silver said.

  I thought I misunderstood. He seemed so busy and unable to engage in conversation even when I was sitting in front of him. “Isn’t there a nurse or someone who answers calls and questions?”

  “No,” he said. “You call me.”

  I don’t have much of a poker face. And I was surprised.

  Silver caught it. “I’m busy,” he said, “and I don’t answer my phone. If you leave a message, I’ll call you back within twenty-four hours. I don’t like to have conversations by email, but if you send me a note saying you want to talk to me, that you have a question, I’ll call you back within twenty-four hours.”

  He said this emphatically. I believed him.

  CHAPTER 5

  Snakes and Ladders

  Day six on the Prednisone and I couldn’t sit still. I couldn’t get warm and couldn’t stop my mind from racing through the scariest scenarios. Most involved wheelchairs. Some included full-blown, four-limbed paralysis. And while my body stayed stationery in these scenes, my mind sprinted around itself and around the room and around the world as if it knew that someday it would be the only part of me that could run. After a lifetime of globe-trotting and marathon-running, my body wouldn’t be able to.

  I inhaled to prevent a big cry, then gave in and cried away. I sat on the floor and sobbed. I rolled over and lay face down on the hardwood and sobbed s
ome more.

  Eventually, I was cried out. Truly, I had no more tears. I got off the floor and went into the kitchen.

  I had the four one-pagers that Silver gave me on each of the drug protocols, and even though the sight of them fortified the fear and sadness that seemed to be all around me, I made a pot of peppermint tea and forced my mind to focus and my eyes to read.

  The options included different brands of interferon drugs, the same drugs Joan had told me about. I sat on the oversized couch and started with the first section on the first page: “How the Drug Works.” On each page, the header was followed by the same sentence: “The way Rebif works on MS is not clear.”

  Thinking I must be missing something—no self-respecting communications pro would headline a section “How the Drug Works” only to follow it with the equivalent of “we have no idea”—I flipped through the pages a few times to be sure that’s what they were saying. And they were. As if the drafters of these documents figured no one would read these things or that anyone who did would be too afraid to question their logic, they wrote: “The way Copaxone works on MS is not clear,” “The way Betaseron works on MS is not clear,” and “The way Avonex works on MS is not clear.”

  I was scared but not scared enough to tinker with my brain chemistry without knowing why. I kept reading and kept seeing more inconsistencies and coming up with more questions.

  Three of the four pages said the drugs “work against viruses and stimulate the immune system.” My confidence sank further. Silver said that MS was an autoimmune condition, and that my immune system was on overdrive, attacking my nervous system. If that were the case, why stimulate it and push it to work even harder? It sounded like a recipe for disaster.

  The next section referred to different types of the disease—relapsing-remitting and secondary-progressive. Silver never told me which kind he thought I had or how anyone could tell the difference. He just said I had MS and should take drugs.

  I forced myself to read the section titled “Studies.” Each pharmaceutical company studied its drug with sample sizes of 251 people, 301 people, 372 people and 560 people, respectively.

  That’s all you’ve got? I’ve got more Facebook friends than any of these studies. And who are these people? The info sheets didn’t say if they were men or women, young or old, how many lesions they had, or their range of symptoms. Were they in wheelchairs, or did they have slight tingling sensations in their fingertips? Were they like me? Would anyone with a slight tingling sign up for a drug trial when the company couldn’t explain how the drug worked?

  And for the fourth time in as many minutes, I wished I’d never told anyone about the tingling. The pins and needles were never painful, just annoying, and until I took the Prednisone, the tingling was limited to very small body parts, just fingertips. And in comparison, this experience—reading these pages—was excruciating. Still, I continued.

  All four drug companies used the same language on results. Each said that patients on the drug, whichever drug it was, “had about one-third fewer flares than patients with no medication.”

  Four drug tests presumably done in four separate locations for four separate drug companies all landed in the exact same spot, or “about” the same spot, on the one-third mark.

  “This is bullshit,” I said out loud. A coincidence like this—four studies landing on the exact same depressing dime?—it’s impossible. And ridiculous. I knew a bit about cherry-picking data. Over and over, I’d seen political consultants pick apart and manipulate polling data so they could say a majority of the population approved of whatever candidate or cause they were selling. And pharmaceutical companies—a $700 billion industry—had much more to gain or lose than any political spin doctor.

  I had no doubt the drug companies presented only the best data they had and “about one-third” was it. That just wasn’t going to cut it for me.

  “How do they get away with this?” I asked no one in particular.

  I flipped to the back side of each page to read the potential side effects. These included injection-site reaction (inflammation, pain or rash in as many as 85 percent of patients), menstrual disorders, heart palpitations, chest pain, shortness of breath, flu-like symptoms (in as many as 75 percent of patients), depression or suicidal thoughts, a decrease in the number of white blood cells, and changes in liver enzymes. For the flu, depression and liver damage, the info sheets conveniently suggested ibuprofen, acetaminophen, antidepressants and lab tests every three months to check complete blood count and liver function. “Be sure to keep appointments,” it read.

  “Fuck all!” I yelled and grabbed my phone.

  “Bruce,” I cried as soon as he answered. “Silver gave me four pages on the four drugs and none of them work. They did studies on, like, two hundred and fifty-one people—why two fifty-one? Why not two fifty or three hundred or three thousand or some big number, or at least some even number? Do you think the extra forty-nine people died? Or something worse?”

  Bruce almost snorted a small, uncomfortable laugh.

  “And even with two hundred and fifty-one people, they proved nothing,” I continued. “Patients on the drug had one-third fewer episodes than people without. That doesn’t feel like enough to outweigh the risks. These things cause heart palpations, liver failure and suicidal tendencies. In most people. Eighty-five percent get the nasty impacts and only ‘about one-third’ see any benefit. So which is the side effect and which is the main effect?”

  Worn out from my rant, I started sobbing. Again.

  “Slow it down, Jody,” Bruce said. “Wait a second, hang on.”

  I heard him moving to a quieter place. Poor guy, he was probably sitting in some bar on the beach in Cabo when I dialed.

  “This doesn’t sound right,” he said. “You’re not going to take those. This doesn’t make sense. Why don’t you give Christopher a call?”

  A friend of Bruce’s in Vancouver, Christopher had cured himself of Lyme disease, which was thought at the time to be permanent and incurable and is still considered difficult to treat if not caught right away. He spent years using diet and exercise to reverse the effects of Lyme on his own body, and he now served as a consultant for folks who didn’t like a diagnosis or prognosis and wanted options. He helped people with any kind of condition sort out their diets and served as a conduit to other healing professionals—some alternative, some more mainstream.

  As I listened to Bruce’s voice, solid and sure, I started to relax. We talked a while longer, and slowly I started to feel more whole. And less alone.

  When I felt calm enough to say good-bye, we hung up and I called Christopher. I introduced myself and told him the story up to that point, including the four drug protocols. He asked where I grew up and how industrial my home town was.

  “I grew up in Detroit,” I said.

  “Oh,” he said, and exhaled audibly. “And where do you live now?”

  “Denver.”

  “Yeah,” Christopher said. “There’s a high occurrence of MS there.”

  He asked more questions, ones Silver had never asked. Christopher interviewed me the way I hope I interview people. His questions were open-ended and intended to learn about me as an individual. He avoided yes or no questions designed to slot someone quickly into a box or category like “young, athletic and female.”

  Christopher and I stayed on the phone for an hour or more. He seemed interested in helping, suggesting I come to Vancouver to meet with him and doctors he knew who could potentially help me decide how to proceed. Since I was still on stolen India time, I said I would for a couple of weeks. We settled on dates, and he asked me to fax or email all my test results to him.

  “No problem,” I said and hung up, thinking that just getting out of town and into new scenery would be helpful. And I loved the idea of having someone to help me navigate. I knew I needed support more than ever before.

 
Next up, I called Sanoviv, the holistic hospital in Mexico that Jonathan’s friend Joan suggested. I spoke to a doctor named Harmony, who told me about herself (she studied functional medicine in Mexico, had two kids, was thirty-four) and about their program of integrated medical care. Sanoviv patients see a kinesiologist to test muscle strength, nutritionists to evaluate diet, a psychologist to explore emotional components of an illness, and a physician to oversee and coordinate the entire program. Individually, each member of the team evaluates the patient, and the team as a whole meets to plot the treatment phase, which in my case Harmony said would most likely involve the neuro-repair program of a high dosage of vitamin C, time in a hyperbaric chamber, and massage and detoxifying body wraps. Each day would include treatments, meditation sessions, delicious, healthy meals and an ocean view. Twenty-one days for $22,000.

  I kept looking.

  The next day, and every day after that, I forced myself into a routine. I’d wake up, brush my teeth, light a candle and sit on a cushion on the floor in the middle of the room to meditate. This too was a gift from Bruce.

  Early on, when I was visiting him on Pender Island, in British Columbia, for the first time, he had patted me high on the chest one day and said, “Babe, you breathe way up here. Can you relax?”

  When I looked at him with confusion—I didn’t know there was any other way to breathe—he took my hand, stood up off the couch and guided me to a seat on the floor in front of a statue of the Buddha. The statue sat before an enormous picture window that faced south, looking out over the water and far into the background, to Mount Rainier.

  Bruce lit a stick of incense and said, “Sweetie, you have to learn to breathe. Meditation will help you. It helped me. Just slow it down, focus on your breathing, breathe with me.”