multiple sclerosis

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Making Peace With My Abnormal Brain

(Andrew Ostrovsky)

(Andrew Ostrovsky)

By Dr. Annie Brewster
Guest Contributor

What you never want to hear from the radiologist: “I wouldn’t mistake it for a normal brain.”

Yet this is what I recently heard from my radiologist friend who kindly took a look at an MRI of my brain. Let me repeat: it was my abnormal brain under discussion here, and I’ll tell you, his assessment was tough to hear.

The state of my brain isn’t exactly news to me. I have had Multiple Sclerosis since 2001, and I have frequent MRIs. Moreover, as a physician at the hospital where I get my treatment, I have the dubious privilege of having complete and immediate access to my medical chart. As such, I often see the MRI images and read the reports before my neurologist does, and fortunately or unfortunately, I understand “medicalese.” (And I have radiologist friends.)

Every time I get an MRI, I devour these reports as soon as they become available on the computer, scanning optimistically for words like “stable.” I even hold onto the absurdly magical hope that old lesions will have disappeared, and that this whole diagnosis of MS has been a big mistake. Instead, I find mention of new “hyperintense foci of white matter signal abnormality” and “enhancing” lesions, “consistent with actively demyelinating MS plaques.” I fixate on words like “volume loss” and “atrophy” and in one preliminary report generated by a resident, I think I saw the word “diminutive.” Did I imagine this?

Despite the sting of these words, I am able to remain somewhat detached. As a doctor, I spend my days looking at radiology images and reading such reports.

Often — due to the formal and impersonal language that is used — it’s hard to remember that the body part being referred to is actually part of a human being. It is even harder to remember that it is part of me!

“I wouldn’t mistake it for a normal brain” penetrates deeper. I understand. My brain is under attack, and is irreparably damaged.

My first response is to mount a defense. I feel the need to tell you that my brain is still a good brain. It just has a few small blemishes. It still works! I recently passed the required ten year recertification medical boards (apparently I will never escape bubble tests), and I feel smarter than ever. I am the mother of four and the primary logistical organizer in my
household, and my (short term) memory is at least ten times better than my husband’s (no offense, honey). Furthermore, research has clearly shown that MRI findings do not necessarily correlate with clinical symptoms in Multiple Sclerosis. So there is no cause for alarm.

Also, the research is promising. Exhibit A is this massive MS conference currently underway in Boston with many great minds focusing their attention on new approaches, such as potential remyelinating therapies, to tackle the disease. (MS damages the myelin, the sheath around nerve cells, and remyelination would restore it.)

My neurologist, Eric Klawiter, at Massachusetts General Hospital, writes me this:

As a research community, we have gained a great deal of knowledge on the mechanism of remyelination and how that process can go awry in MS. There are several candidate compounds demonstrated to promote the body’s ability to differentiate precursor cells into cells that lay down new myelin (oligodendrocytes). It is yet to be established whether these candidate therapies will work best to promote immediate recovery from relapses or whether they will also be effective in the setting of remote demyelination.

Of course, any potential new therapies are years or more away and don’t do much for me right now.

So, underneath my bravado, there is vulnerability. Continue reading

Patient Angst: When You Just Have To Say ‘No’ To The Doctor

Dr. Annie Brewster, who has MS, struggled over the decision to reject her own doctor’s advice.

By Dr. Annie Brewster
Guest Contributor

Like most doctors, I am an overachiever and I have always been a “good” student. Throughout my education, I perfected the art of making my teachers happy. I made it through prep school, college at Stanford University and Harvard Medical School with high honors. I am used to doing what’s expected of me, and doing it well. I thrive on the rewards associated with such behavior.

But now, as a patient with Multiple Sclerosis, I find myself in an unfamiliar role. I am deliberately choosing to ignore my doctors advice. He wants me to be on medication, but I quit a month ago. While I trust that I am doing the right thing, I can’t help but feel that I am a “bad” patient, a disappointment. Undoubtedly, part of this is due to my neurotic, overachiever tendencies. My doctor has not reprimanded me. He has simply made his opinion clear, as he should. Still, I sense a subtle disapproval and I feel misunderstood and boxed in, like he doesn’t really see the whole me.

Because I sit on both sides — as doctor and patient — I am especially interested in exploring these feelings. Why do I feel like a disappointment? Is there such a thing as a “bad” patient? When should we listen to our doctors, and when should we not? As patients, are we free to disagree?

As a physician, I would like to say that doctors do not classify patients as “good” or “bad”, but I can’t. Consciously and unconsciously, and of course in varying degrees, we do. To be honest, my job is easiest when a patient accepts the diagnosis I provide, understands my explanation of the disease process and the pros and cons of various treatment options and ultimately follows my recommendations. It is particularly satisfying when patients do what I say, get better and then express gratitude. A neat and tidy package, wrapped up and sealed. A sense of mastery.

Patients who don’t follow my recommendations, on the other hand, can be frustrating. I am trying to help, but I can’t, or at least I think I can’t. In medicine, we label such patients “non-compliant,” a term fraught with negativity. Continue reading

Alzheimer’s Enemy May Help In Multiple Sclerosis, Study Suggests

Stanford University Neurology Professor Lawrence Steinman (Stanford News Bureau)

By Karen Weintraub
Guest contributor

A protein thought to be a hallmark of Alzheimer’s may turn out to be helpful against multiple sclerosis, new research from Stanford University suggests.

Beta-amyloid has long been considered a prime culprit behind the brain degeneration of Alzheimer’s. But Stanford Neurology Professor Lawrence Steinman said he kept finding it and its precursor protein in the brains of MS patients. “The question is, what is it doing there? Certainly, MS doesn’t look like Alzheimer’s,” he said.

So he investigated the role of the protein in a mouse model of MS that’s close, but not exactly like the human version. He expected to see that the villain of Alzheimer’s was similarly destructive in MS, or at least had no effect at all.

Instead, he found that when he added beta-amyloid to the brains of afflicted mice, they got better – in many cases substantially so. “We tried three or four variations of the model to make sure it wasn’t a fluke,” he said. But it wasn’t. Giving sick mice beta-amyloid “makes the animals get better and it makes them get better quickly and quite noticeably.”

It’s much easier to help mice than people, though, Steinman said, warning that it’s too early to know whether people with MS will see the same benefit. MS is an autoimmune disease in which the body attacks the coating around white brain cells that speeds up brain messages. People with MS often complain of fatigue, dizziness, numbness and double-vision.

Continue reading

How Conflict Of Interest Corrodes Trust: One Patient’s Story

“Sunshine laws” are casting more light on payments that doctors receive from drug and device companies — including here in Massachusetts.

Media reports — led by ProPublica — have tended to focus on the payments themselves, listing individual doctors in public databases. But what happens when patients use the databases to check on their own doctors?

In the latest Health Affairs, Maran Wolston, a multiple sclerosis patient who has taught medical ethics, describes her own loss of trust in her neurologist. When she looked him up in Minnesota’s “Dollars for docs” database, she found he had received more than $300,000 from drug companies over three years, including the makers of the drugs he had prescribed for her. How could she help but wonder whether that money might affect his recommendations? It’s a sad and instructive story, well told by an exceptionally savvy patient. She writes:

I knew that I had felt pressured to take medications by my neurologist. When I found that he had been paid large sums of money—six times my yearly salary—to work for the manufacturers of those same drugs, my loss of faith was complete. I never returned to his neurology clinic again. Continue reading

Listening To Patients: Farewell To A Doctor Of The Greatest Generation

Charles Marcel Poser upon his induction into the Royal Society of Medicine in Edinburgh

“He showed the way forward. He lightened the burden of a terrible disease. He made it possible for me to live with loss and the chronic illness of my beloved sisters. And he did this all by example—never by instruction, never by giving advice, never by telling me what to do or think. He did it simply by being who he was……a man who had seen the very worst of what life in the twentieth century had to offer but who nonetheless never lost his zest for experience and his joie de vivre.”

Charles Marcel Poser, 86, a neurologist world-renowned for his expertise in multiple sclerosis, died late last year at his home in Boston after a long illness. At his memorial service this month, the historian Ellen Fitzpatrick (author most recently of “Letters to Jackie: Condolences from a Grieving Nation”) spoke about Poser’s extraordinary gifts as both a physician treating her two sisters with MS and as a human being. Her remarks capture how a doctor can heal and sustain not only patients, but their families. She kindly shares them below, and adds this biographical note:

Born in Antwerp to a family of diamond merchants, Charles Poser escaped Nazi-occupied Belgium with his family and settled in New York City. He enlisted in the U.S. Army, serving in a military intelligence unit and later with the 11th armored division. He was at Bastogne, the famed Battle of the Bulge, and the liberation of  the Mauthausen Concentration Camp in Austria. After earning a medical degree from Columbia University, he began a long and illustrious career that included administrative, clinical and teaching positions at the University of Vermont, Boston University, the Veterans Administration, and Beth Israel Deaconess Medical Center.  The author of hundreds of scientific articles and several influential books, Poser published the first definitive system for measuring and describing MS. The “Poser Criteria” were quickly adopted worldwide, withstood the test of time for many decades, and only now are being superseded by newer criteria based on improved imaging technology. He received numerous academic honors worldwide, including the Order of King Leopold from his native Belgium.

I’m honored to have the opportunity to share a few memories of Charles and to speak as a friend, a family member of two of his patients, and by extension, for those two patients who cannot be here today. We were all privileged to know Charles, who shaped our lives in so many profound and lasting ways.

I  met Charles Poser in 1989,  not long after my sister Betsy was diagnosed with multiple sclerosis. I was then a beleaguered young assistant professor at Harvard and one of the upsides of the job were the many wonderful people I met at the university. One was a neurologist – Bruce Price – who recommended Dr. Poser to me as the best person to consult on my sister’s condition. I still recall Bruce’s description of Charles: “He is a world renowned expert on multiple sclerosis, with the manner of a country doctor.” In retrospect, I’m not sure what country Bruce was referring to! For the Charles Poser I came to know was a Renaissance man of remarkable experience and refinement  – European in so many ways – but also thoroughly American in his sensibilities.

I can remember to this very day the first time I saw Charles.  I had secured an appointment with him for my sister and on the day of that initial visit, we sat in a clinic waiting room at Beth Israel watching doctors come and go. As they appeared, carrying charts, their white coats flying, I couldn’t help but wish that some would be this august Dr. Poser and that others would not be. When Charles called out my sister’s name, I felt right then and there an immediate sense of relief.  His look of authority, and businesslike tone were offset by his crisp blue Oxford shirt, his khakis, rep tie and best of all LL Bean moccasins. THAT was country!

As the three of us sat down that day in the examining room, Charles took a careful history, did a thorough exam,  and reviewed the available tests and scans. His wide knowledge and vast experience with demyelinating disease was more than evident, of course. But it was the dry sense of humor, the wit, the twinkle in his eye, his searching intellect, the ready skepticism, his evident concern and his focus on the way forward that won us over instantly. Those qualities meant as much to my sister and to me at that moment as his reputation and expertise. And as the years unfolded, they really meant everything. Continue reading

Trying To Break The Genzyme Impasse

The Wall Street Journal reports that the French drug maker Sanofi-Aventis SA, which has been trying unsuccessfully to takeover Cambridge-based Genzyme, has formed a “working group,“ to examine the sales prospects of the company’s experimental drug for multiple sclerosis, Campath.

Sanofi recently launched an $18.5 billion hostile bid for Genzyme, which Genzyme has urged shareholders to reject. Genzyme argues it is worth more than the $69 a share Sanofi is offering, and has been promoting its growth prospects in presentations to shareholders. It has focused in particular on potential sales of Campath…

But even with this attempt to break an impasse in negotiations, it looks like both company’s have dug in. The Boston Globe reports that Sanofi won’t raise it’s offer, while Genzyme continues to insist it’s worth more:

The top executive of French drugmaker Sanofi Aventis SA, refusing to budge from his $18.5 billion bid for Genzyme Corp., this morning unleashed a withering critique of the Cambridge biotechnology company’s contention that is worth about $89 a share, billions of dollars more than the $69 a share his company has offered.

Claiming that Genzyme’s fresh earnings projections, issued last Friday, are unrealistic and “ignore the market,” Sanofi chief executive Christopher A. Viehbacher told investors in a conference call that the company’s unsolicited tender offer fairly values Genzyme and is in the best interest of its shareholders. The tender offer expires Dec. 10.

Boundary Issues: A Doctor With MS Confides In Her Patient

Annie Brewster

Dr. Annie Brewster, with her son Jamie

Typically lost in the policy debate is the fact that health care, at its core, involves intimate, personal relationships between patients and their doctors. Those roles are usually narrowly defined, but sometimes it becomes necessary to cross traditional lines in order to forge a therapeutic, and ultimately compassionate, connection.

Anne Brewster, a Boston internist, has multiple sclerosis, an autoimmune disease of the central nervous system. One day, she decided to risk disclosing something about herself to a patient:

“I have the same disease,” I told my patient over the telephone. There was a pause, and then a sigh. “That makes me feel so much better,” she said.

I was speaking to Ms. R, a soft spoken 30-year-old female with gentle brown eyes whom I had seen the previous day in the urgent care clinic where I work. She had come in complaining of difficulty remembering things. “I am in the middle of speaking and I suddenly forget what I am talking about, or I can’t find the words to say what I want to say,” she had told me.

“My husband and my friends say that I am not acting like myself.” We spoke further. A few months back, she had noticed a feeling of unsteadiness when walking, “like the world was off kilter,” but this had since improved. And perhaps she had been more clumsy than usual lately, dropping things. “I know something is wrong and I am frightened,” she had said.

She had a left-sided Babinski sign on exam–her big toe flexed upwards toward the top of her foot when I stroked the bottom surface with my thumb, a normal reflex in infants but pathological in adults, and evidence of damage to the central nervous system. I ordered MRIs of her brain and spine. The studies were done the following day and showed numerous demyelinating plaques consistent with Multiple Sclerosis.

I called her at home to give her this news. While I informed her that the diagnosis was not yet certain, that further evaluation and testing by a specialist would be needed before we could say anything definitive, she heard only “Multiple Sclerosis”. “What does this mean?” she asked, but she didn’t wait for my answer. She began to cry. “I am so young. There was so much I wanted to do. I wanted to have a family.”

“I have the same disease,” I told her. I had decided to reach across the space between us and to share a bit of myself. I went on to say that I have four kids, that I still ski, run, play lacrosse and work as a doctor, that I am healthy and energetic. “There is tremendous variability in how people do,” I offered, “and some people do very well. It is the unknown that is scary.”

In revealing personal information, physician to patient, I had crossed a line. I did so intentionally, in an effort to bring compassion to our exchange, but still today, I cannot shake the slightly uneasy feeling that I have somehow breached medical etiquette.

When we enter medical school and don our white coats for the first time, the division between doctor and patient begins–“us” and “them.” We start our education by dissecting a human corpse, and in so doing, learn early on to separate the body from the person. We master the parts-the Ischial Tuberosity, the Latissimus Dorsi, the Sternocleidomastoid, the Flexor Digitorum Longus. We think about lymphatic drainage, muscle insertions, arterial supply, and nerve innervation. We divide the body into sections: distal and proximal, dorsal and ventral, lateral and medial.

We go on to study disease processes-so many that our heads spin. Eventually, we begin to take care of patients and are encouraged to remember the person behind the disease. We are instructed to make eye contact, to sit on the edge of the bed when we speak to a hospitalized patient, and to use touch when appropriate, by holding a hand or squeezing a shoulder. Empathy is cultivated, but at the same time, explicitly and implicitly, we are taught to keep an emotional distance. Sharing personal information is taboo.

Part of this is for survival. None of us could bear to feel all of the pain, the fear, the loss that we encounter daily in medical practice. If we allowed ourselves to realize that we are vulnerable to all of the diseases we treat, all the time, we could not function. And part of this is about being a good doctor. Emotions can cloud judgment, and the preservation of professional boundaries is essential to quality care.

But true objectivity is a myth. We are human beings, and our personal experiences are at play in all of our interactions. The white coat does not protect us from our humanity. In meeting Ms. R, I thought of my own illness. I remembered sitting on the doctor’s examining table, cold and exposed in my paper gown, as I spoke for the first time about the numbness and tingling in my legs. I remembered lying in the MRI machine, trying to ignore the loud banging of the magnet, the closeness of the walls around me, and my own terror. I remembered the moment of diagnosis. I was alone, and was told rather abruptly to hurry up and finish having my children so that I could begin treatment. When I left the office I sat in my car and cried. I was overwhelmed by fear, anger, and shame. I envisioned the worst, thinking of everything I would have to give up, certain of the wheelchair in my future. That was eight years ago.

As physicians, our duty is to bring self-awareness to our patient-doctor encounters. We cannot let feelings impair our judgment. We must be cognizant of what we bring to the relationships, and avoid over-identification with patients. Our values are not necessarily their values. Patient best interest must always come first. At the same time, we must honor our humanness, trust our emotions and have the courage to expose our vulnerabilities when it feels right. In some instances, this may be the most therapeutic and compassionate thing we can do.

“That makes me feel so much better,” said Ms. R, and I believed her.