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Excerpt
"In 1983, I was the
picture of health. I looked fit, I felt great, and I had no idea that a
silent crippler lurked inside me, stealthily damaging my brain, nerves,
blood vessels, and in fact nearly every organ in my body.
Because of my medical training, however, I noticed
small signs that something wasn’t right, and I knew enough to be worried
even when my doctors dismissed those signs as “nothing to worry about.” I
pursued the few clues that my potentially deadly disease left, eventually
obtaining a diagnosis of pernicious anemia (an autoimmune form of vitamin B12
deficiency), and as a result I’ll never suffer the terrible symptoms that
this disorder can cause.
Millions of other victims of B12
deficiency—many of them also victims of doctors who mistakenly ruled out B12
deficiency with serum B12 tests or blood smears, or never
considered the diagnosis at all—aren’t as lucky. Some are infants and
toddlers, left developmentally disabled for life. Some are young adults,
mistakenly diagnosed as having multiple sclerosis or told, erroneously,
that they are “incurably” infertile. Others are middle-aged men and women,
tormented by balance problems, numb hands or feet, or mysterious shooting
leg pains so agonizing that they can barely walk. Some are diagnosed with
early-onset dementia or pre-Parkinson’s disease in their thirties or
forties. Some are people so depressed that they try to kill themselves.
Some appear to be full-blown schizophrenics. And still others are seniors
living out their days in nursing homes, because their doctors think they
have Alzheimer’s disease.
It’s too late to completely reverse the symptoms
of many of these people—but it’s not too late to protect yourself, or the
people you love, against a similarly tragic fate. In fact, it’s
extraordinarily simple to prevent or completely reverse the symptoms of B12
deficiency if the deficiency is discovered in time. But this condition
isn’t like other vitamin deficiencies, and simply taking a standard
multivitamin pill won’t always protect you; instead, you need an accurate
diagnosis and medical treatment. And getting a diagnosis isn’t always easy,
as I know from experience.
I had no idea that an invisible disease was
attacking my body when I went for a pre-employment physical examination
back in 1983, when I was just nineteen. The first clue came when the
examining physician reviewed my blood tests and commented on my abnormally large
red blood cells. (In retrospect, I may owe my life to the fact that this
test came back positive. Many people suffer neurological damage decades
before their blood tests become abnormal, and by then it’s too late.)
“What kind of diet do you eat?” the doctor asked
when he saw my results. When I said that I didn’t like vegetables, he told
me to eat more of them, dismissing my blood abnormality as merely a sign of
a diet low in folic acid.
One month later, another doctor commented again on
my large red blood cells, but concluded that my lab results were
“insignificant.” Like the first doctor, this physician sent me on my way,
unaware that he’d just missed diagnosing a disease that could destroy my
brain, cripple my body, or even kill me.
Two years later, in nursing school, I bought a
manual describing laboratory tests and their meanings. In the section on
“macrocytosis”—the medical term for unusually large red blood cells—the
manual outlined two different problems, folic acid deficiency and B12
deficiency, which could cause this abnormality. Since I loved B12
-rich meat and didn’t like folate-rich vegetables, I could see why my first
doctor picked low folic acid as a likely culprit in my case. But I wondered
why he’d never considered B12 deficiency as well.
Thinking to myself, “It can’t hurt to be sure,” I
persuaded a doctor at my hospital to order a serum folate and serum B12
level for me. That night, when I mentioned the tests to my parents, my father
surprised me by saying that my grandfather had been diagnosed with
pernicious anemia—the most well-known, although not the most common,
cause of B12 deficiency—back in the 1960s. So I wasn’t
completely caught off-guard a few days later when my own B12
test came back low. I started receiving B12 shots, grateful that
I’d obtained a diagnosis before I suffered any symptoms.
But that wasn’t the end of my story. Two years
later, when I needed surgery, I mentioned my B12 deficiency to
my surgeon. Skeptical because she thought I was “awfully young” to have
this problem, she sent me to a hematologist, who dismissed the idea that I
had a B12 problem, in spite of my earlier diagnosis and positive
findings. (In fact, the hematologist’s chart notes, which I read
surreptitiously at a later visit—a nurse’s instinct!—suggested that I was
merely a hysterical female, imagining problems that didn’t exist.) I
insisted he run tests anyway.
The hematologist had changed his mind by the time
his office called me, a week later, asking me to come in “right away.” By
then, the tests he’d ordered had revealed that I indeed had juvenile
pernicious anemia. In fact, he exclaimed exuberantly, I was the youngest
patient he’d ever seen with pernicious anemia in his twenty years of
practice. I felt like a rare freak of nature. This time around, the doctor
was friendly and informative—and, I sensed, secretly relieved that I’d
insisted he verify my earlier diagnosis. He certainly wouldn’t have
detected my problem on his own, even with all of the information I’d given
him on my first visit, because that surreptitous glance at my chart showed
that his suspected diagnoses didn’t even include B12
deficiency.
In short, although I’d virtually handed this
doctor my diagnosis, he nearly missed it. If I’d come to him without the
benefit of my nursing training or without already knowing that I had a
history of B12 deficiency, his failure could have injured or
killed me—because, if I had passively accepted his initial opinion, I would
have stopped receiving the B12 shots that saved my body from the
ravages of pernicious anemia. And yet, in a way, I’m thankful to him.
Why? Because his disbelief led me to ponder an
important question: How many other people suffer or die, because their doctors
don’t consider the simple diagnosis of B12 deficiency? I was
lucky, because I had enlarged red blood cells—the easiest-to-spot sign of
the problem—and a family history of pernicious anemia. Yet despite these
red flags, this doctor, as well as others, missed the correct diagnosis.
Unlike me, a third of people with B12 deficiency never develop
either large red blood cells or anemia, meaning that their disease
is invisible to routine blood tests. In addition, most have no known family
history of B12 deficiency. I wondered: Were doctors
misdiagnosing such patients on a regular basis?
My curiosity developed, over time, into nearly two
decades of research on the scope of B12 deficiency. I became an
expert, reading every textbook and journal article I could get my hands on,
and making connections with both clinical doctors specializing in B12
deficiency and scientists involved in B12 research. My husband
Jeffrey, an emergency medicine physician, also conducted research to
determine the percentage of B12 -deficient patients seen in his
emergency department. What we learned about the prevalence of B12
deficiency, the havoc it wreaks on the entire body, and the number of
undiagnosed cases, is alarming.
B12 deficiency is very common—not just
in seniors and middle-aged people, but even in teens, children, and
infants. As many as 20 percent of people over sixty (and, according to one
new study, 40 percent of seniors with severe mental or physical problems)
are suffering, most of them unknowingly, from its ravages. Thousands of
young children, teens, and young adults have borderline B12
levels, below what’s considered necessary to keep their brains functioning
optimally. And millions of people labeled as having Alzheimer’s, multiple
sclerosis, early-stage Parkinson’s disease, autism, learning disability,
depression, bipolar disorder, vision loss, schizophrenia, diabetic
neuropathy, and other severe and often incurable disorders could actually
be victims of the easily diagnosable, treatable, and (in its early stages)
completely curable problem of B12 deficiency.
Initially I was tremendously excited by the
extensive research proving that B12 deficiency plays a role in
so many seemingly hopeless problems. That’s because this is a problem
that’s simple to fix. It’s an inexpensive problem as well, with treatment
costing only a few dollars a month—pocket change, compared to the expense
of other medical conditions. Thus, diagnosing and treating patients with B12
deficiency could both reduce the pain and suffering of these patients and
cut medical care costs—a win-win situation, in my opinion.
My excitement was short-lived, however, because
most of the doctors I worked with didn’t care about an epidemic of
undiagnosed B12 deficiency. They didn’t care that the serum-B12
test available to diagnose the problem frequently was inaccurate and
misleading. They didn’t care about the growing number of journal articles
warning about the high costs, both to patients and to society, of doctors’
rampant failure to identify this problem. Indeed, they accused me of
“playing doctor,” and balked at ordering accurate B12 tests,
even for patients with clear signs and symptoms of the disorder.
Eventually, I was told, in no uncertain terms, to drop the subject or lose
my job.
Their attitude didn’t stem simply from the fact
that I am a nurse, rather than a physician (although that didn’t help). My
husband encountered a similar level of apathy, even when he showed his
colleagues study data revealing that large numbers of his own facility’s
patients suffered from undetected B12 deficiency. Later I
learned that other physicians had encountered the same negative response
from their own colleagues.
Faced with an impenetrable wall of apathy and
eventually outright hostility, I slowly and quietly gave up. What else
could I do? Those with the ability to diagnose and fight this disease chose
instead to ignore it. Noted physicians had fought the battle to bring the B12
-deficiency epidemic to light, and had lost. What chance did I have of
making a difference?
My silent surrender lasted until the day I was
asked to discharge a patient who’d been labeled by the preceding shift as a
“frequent flyer,” a “drug-seeker,” and a patient who “did not want to go
home.” When I examined this woman and reviewed her laboratory results and
medical history, I saw painfully obvious indications of B12
deficiency—evidence that even a first-year medical student should be able
to recognize. I also noted the complete absence of any effort by her
doctors to test her accurately for this problem during her previous
hospital admissions, or even to recommend such testing to her family
physician. This sad and frightened woman had suffered for years from
crippling and seemingly mysterious symptoms, every one of which
could be explained by B12 deficiency, and yet no one had
correctly evaluated her for the disorder. Instead, they’d simply labeled
her as nuts.
She wasn’t the first patient I’d seen dismissed by
doctors who overlooked the signs and symptoms of B12 deficiency.
In fact, she was only the latest in a long line of patients written off as
hopeless by medical professionals who’d failed to diagnose a
life-threatening, and very common, medical problem. Indeed, I’d seen far
worse cases, including patients who were on the verge of death, or in a
permanent state of dementia, as a result of undiagnosed B12
deficiency. Each case broke my heart. But this time, as I wrote up the
discharge papers for this woman who’d received no real help and no real
treatment—only a condescending response from her doctors and nurses, a
large hospital bill, and a possible death sentence—my anger hit critical
mass.
I knew that my own health and life had hung in the
balance years earlier, when doctors told me that my troubling lab test
findings were “insignificant.” Now, on a regular basis, I was watching
other patients being sentenced to death or disability by the doctors they
trusted. I knew that many of these patients would wind up back in our
hospital some day with strokes, dementia, depression, fall-caused
fractures, the need for blood transfusions, and other problems stemming
from undiagnosed B12 deficiency.
I could no longer stand by and be a silent
accomplice to an epidemic of apathy and non-diagnosis that is leaving millions
of young and old patients crippled or dead. As a medical professional, I’d
long since come to terms with the daily tragedy of lives ruined by diseases
that can’t be prevented or cured. But I could not come to terms with the
continuing parade of lives ruined by the failure to detect and treat a
simple-to-identify, simple-to-treat, simple-to-cure disorder. Neither could
my husband, a physician who finds it reprehensible to refuse a patient the
couple of tests that could prevent nearly every case of disability
or death due to B12 deficiency.
This book was born out of our frustration and
anger over these lost lives. But it was also born out of hope—the hope that
we can help many current and potential victims of B12 deficiency
by putting this information in the hands of sufferers and their families,
as well as in the hands of concerned medical professionals.
If you are a medical consumer, this book will empower
you to protect yourself and your family members, by helping you to identify
loved ones at risk for B12 deficiency, and to obtain a real
diagnosis and real treatment before it’s too late. And if you are a medical
professional, we hope you will examine the compelling body of research
reviewed in this book and make complete B12 screening (not
just often-inaccurate serum B12 levels and blood smears) part of
your standard practice. The hundreds of studies we cite, published in major
and respected medical journals, prove that few diseases are more prevalent,
simple to diagnose, and easy to treat than B12 deficiency—and
few carry such a high, yet entirely preventable, risk of deadly disease or
infirmity.
Above all, the message of this book is that the
suffering caused by B12 deficiency, an “invisible” problem so pervasive
that it touches the lives of nearly every family in America, is unnecessary.
We can stop this cruel disorder in its tracks, before it destroys more
lives. I dodged the bullet of B12 deficiency, and so can its
other potential victims—but only if patients and doctors alike open their
eyes to the scope of this hidden epidemic."
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