Saturday, 18 June 2011
Saturday, 11 June 2011
What's Wrong With Me?: The Frustrated Patient's Guide to Getting an Accurate Diagnosis.
Some pages from an ebook I'm reading; What's Wrong With Me?: The Frustrated Patient's Guide to Getting an Accurate Diagnosis.
The Diagnosis Dilemma
As long as diagnosis is in doubt, cause and treatment are guesswork.
—Melvin Gray, M.D.
Modern medicine has extended our life span and protects us from the
epidemics that once wiped out millions of people. High-tech medical facilities
dot the national landscape, billions of dollars are spent on research, and
the constant advances in diagnostic equipment and testing continue to
reveal hidden secrets of the human body. Our doctors are trained in medical
schools that are indisputably the best in the world.
To some of you, the idea that doctors can make diagnostic mistakes
when they have all this research and technology at their disposal may be
inconceivable. Perhaps like millions of Americans you believe that you’re
getting good medical care from your own physician, and we would generally
agree. But if you are reading this book, chances are you or someone you
love is suffering from unexplained medical symptoms.
So if you think doctors can accurately diagnose every patient each time
one walks into their offices, think again. We are about to share some tragic
stories and startling statistics in this chapter. They are not meant to scare
you. Rather, we hope that once you understand the extent of the diagnosis
dilemma facing doctors and patients today, you will be encouraged to take
charge of your health and become more proactive in your search for the correct
diagnosis and treatment.
In her book, Cancer Schmancer, television star Fran Drescher writes
about her frustrating two-year search for a diagnosis that took her to eight
physicians, all of them highly reputable. They gave her erroneous diagnoses
and failed to check her for cancer because she did not “fit the profile.” It was
only through her own persistence that she finally received the correct diagnosis
and treatment.
Unfortunately, this celebrity case is not a rare or isolated instance. Consider
the case of Laverne, an older, intelligent, and highly respected nurse.
She visited the doctors at her health maintenance organization (HMO)
repeatedly for more than a year with symptoms that made her concerned
about the possibility of cancer. She shared her “intuitions” that something
was wrong, but her doctors didn’t think any special testing was indicated,
so her HMO wouldn’t pay for it. The fact that her own medical colleagues
didn’t take her seriously caused tremendous psychological distress.
Laverne, like so many undiagnosed patients, succumbed to the belief
that it must be “all in her head.” It was only when she reached the advanced
stages of her cancer that her doctors finally realized their mistake. By then
it was too late; Laverne passed away within months. The local nursing community
mourned her death both as a personal tragedy and as a failure of the
medical system they all worked for.
If you’re still not convinced about how often these kinds of tragedies
can happen, consider the shocking findings from an article in the Journal
of the American Medical Association ( JAMA). A study of autopsy reports covering
a ten-year period found that doctors failed to diagnose serious cases
of cancer in one of every ten patients. In half of these cases, the untreated cancer
caused the patient’s death.
Unfortunately, the huge margin of diagnostic error in medicine is not
limited to cancer. Research studies, for example, reveal that at least a quarter
of a million deaths are medically induced every year; that is, four times
as many people die from misdiagnosis and other medical mishaps than died
in the entire Vietnam War.
The Critical Proportions of the
Diagnosis Dilemma
A survey conducted by the Harvard School of Public Health and the Henry
J. Kaiser Foundation examined the views of eight hundred American doctors
and twelve hundred adult patients. Fully 35 percent of the physicians
said that either they or members of their family had experienced medical
errors in the course of being treated. Most said the errors had “serious consequences”
such as death, long-term disability, or severe pain. Three in ten
of these doctors had seen an error that caused serious harm to patients (outside
of their families) within the past year.1
A recent study published in Chest, the journal of the American College
of Chest Physicians, showed that one out of every five patients who died in
medical intensive care units (ICUs) was misdiagnosed. An accurate diagnosis
would have resulted in different treatment that might have saved
patients’ lives. This study was conducted at the prestigious Cleveland Clinic
Foundation in Ohio, whose state-of-the-art diagnostic facilities are considered
among the best in the world. Other research indicates that this misdiagnosis
rate is typical of ICUs nationwide.
In another JAMA issue, the largest study ever conducted on peripheral
artery disease (which is believed to affect eight to ten million Americans and
Western Europeans) revealed that almost 30 percent of people with this condition
are undiagnosed, underdiagnosed, or undertreated.
In a random study of medical practices conducted by two HMOs, 14
percent of patients labeled with hypertension (high blood pressure) did not
have this condition. Other error rates were 44 percent for coronary artery
disease, 50 percent for congestive heart failure, and 33 percent for arterial
fibrillation. The nineteen-physician practice receiving this “report card” is
among the most reputable in Philadelphia.
The National Library of Science reported a 1989 case study of 1,000
patients followed in an internal medicine clinic in Maryland over a threeyear
period. Eighty-four percent of those patients (840 out of 1,000) could
not be diagnosed—a staggering statistic.
In another study at the University of Iowa Medical College, half of the
more than four hundred patients interviewed reported having unexplained
physical symptoms “usually” or “always.”
Older patients often experience diagnostic nightmares. For example,
the asthma death rate in those over sixty-five is ten times the death rate for
the same condition in younger adults. According to researcher Paul L.
Enright, M.D., of Tucson, “Diagnosis in these patients is only half as good
as it should be. Fifty percent of elderly asthmatics have not been diagnosed.”
In his bestselling book Head First, Norman Cousins discussed a study
of the medical records of elderly cardiac pacemaker recipients at Albert Ein-
The Diagnosis Dilemma
Becoming Your Own Medical Detective
stein Medical Center in Philadelphia which revealed “twenty percent of
implantations to have been completely unjustified and done on a misdiagnosis
of information.”
If we generalize from these alarming statistics to the U.S. population
as a whole, it would not be unreasonable to assume that literally millions of
patients are undiagnosable, misdiagnosed, or diagnosable but not yet identified.
And while the plight of undiagnosed patients is bad enough, the
misdiagnosed patient may be a walking time bomb. Medications and procedures
meant to cure the misdiagnosed condition can backfire and will
often cause further damage, while the real (undiagnosed) condition is left
untreated.
Case Study: Penny
It took six years and visits to multiple doctors for Penny, a woman in her forties, to
finally receive the correct diagnosis and treatment. She suffered from numerous
symptoms that appeared at different times over a six-year period, including dry eyes,
pleurisy, aches and pains, flashing lights in the periphery of her vision, and rashes
that looked like small bruises. The problem was that Penny’s doctors never treated
her array of symptoms as a whole. Instead, each symptom was treated individually:
artificial tears for her eyes, ibuprofen for her aches, dermatological creams for her
rash, and medications to treat migraines.
Because she was not properly diagnosed, her condition steadily declined. It
was not until her symptoms became so severe that she had become bedridden,
receiving massive doses of intravenous steroids, that her doctors finally connected
her diverse symptoms to make the correct diagnosis of Sjögren’s syndrome, an
autoimmune disease in which the body’s immune system mistakenly attacks its own
moisture-producing glands.
Why Doctors Can’t Always Make the
Correct Diagnosis
In his article “Mystery Maladies Pose Challenge for Doctors and Patients,”
Arthur Hartz, M.D., candidly explains, “Doctors have more of a medical
model for treating strep throat or heart disease . . . but when it comes to
unexplained illnesses or symptoms, they don’t really have an approach that
is established.”
As illustrated by Penny’s story, even diagnosable diseases are often difficult
for doctors to identify, and this is especially true for many immune
and autoimmune disorders. According to the American Autoimmune and
Related Diseases Foundation (AARD), as many as fifty million Americans
(75 percent of them women) may suffer from autoimmune disorders, which
are notoriously difficult to diagnose in spite of advances in medical technology.
“Women have to see five or six doctors before they find someone
who can tell them what they have,” the AARD report states. Clearly,
“. . . the biggest obstacle that patients with autoimmune disease face is just
getting a diagnosis.”
Well-documented diseases such as lupus are elusive and difficult to
diagnose, so patients with these conditions are often dismissed out of hand,
with doctors telling them “it’s all in your head” (in the same way that multiple
sclerosis sufferers used to be referred to as “fakers” before the advent of
the technology that could prove the existence of this disease). Part of the
problem with such diseases, as Jeff Baggish, M.D., explains, is that “almost
half of all persons afflicted with an autoimmune disease experience periods
of spontaneous remission and exacerbation as opposed to a continuous worsening
of symptoms.” Unless a doctor is particularly knowledgeable or can
take the time to follow a patient closely, it is difficult to find the correct
diagnosis.
Doctors themselves will admit that medical technology doesn’t necessarily
guarantee diagnosis. For example, Dr. Kurt Kroenke, M.D., senior
scientist at the prestigious Regenstrief Institute for Health Care, warns,
“Only half of all symptoms evaluated by a doctor have a discrete physical
cause and at least one-third are medically unexplained.”
What’s the Answer?
Dr. Rosenbaum and I are two of the staggering number of patients who have
been trapped in the diagnosis dilemma. We know that if you’re reading this
book, you’ve experienced the frustration of having medically unexplained
symptoms. You’ve probably been to more than one physician complaining
of your symptoms. You’ve received no diagnosis at all or (worse yet) con-
The Diagnosis Dilemma 7
8 Becoming Your Own Medical Detective
tradictory diagnoses. The medications you’ve been prescribed don’t seem to
help, and some of them may make you feel worse. As hard as you try, your
symptoms make it difficult to keep functioning and meet all your responsibilities;
perhaps your family life is being affected or your job is in jeopardy.
We have written this book to offer you hope, and the best part is that
you can help yourself !
Making a correct diagnosis is like solving a crime. Physical exams and
laboratory tests can eliminate some of the suspects, but the culprit is still at
large. The evidence must be tracked down and documented with precision.
In some cases, it might literally be a life-and-death matter to find it. And
you cannot be totally reliant on your doctors to do it. Among other reasons,
they simply may not have the time to help you in the way you need. You
must learn to become your own medical detective and follow that evidence
trail in order to find your answers.
This book is in no way intended to replace your physician. Rather, your
doctor will become your consultant much in the way Dr. Rosenbaum has
become mine (Lynn’s). But you will have to assume the main responsibility
for your own health care. Dr. Pamela Gallin, one of the world’s leading pediatric
surgeons, writes in her book How to Survive Your Doctor’s Care (Lifeline
Press, 2003), “Now, more than ever, the onus is on the patient to ensure
proper medical treatment.” In the following chapters, we’ll discuss all the
aspects of good medical detective work, including how to do some of your
own medical research and sift through that information in order to consider
all the possibilities while keeping an open mind. We will reveal our revolutionary
Eight Steps to Self-Diagnosis, the centerpiece of this program, and
explain how to choose the right physicians and create productive partnerships
with them as you go through the process. If you’re willing to put in
the time and effort, we’ll show you how to improve your chances of quickly
getting to an accurate diagnosis.
Now let’s take a look at some of the pitfalls that contribute to the existing
diagnosis dilemma.
****CONTENT SKIP***
A different set of illnesses of an environmental nature appear to be a
by-product of disturbance of ecosystems. This would include, for example,
occurrences of Lyme disease in suburbia. Given that Borrelia burgdorferi, the
bacteria that causes Lyme disease, has been around a long time, why are people
suddenly being diagnosed with it? In open woodlands, foxes and bobcats
keep a lid on the bacteria by hunting the mice that carry it, but when
these predators vanish with our woodlands as developers clear lots for new
subdivisions, the mice and their ticks proliferate unnaturally. Richard Osterfield,
an animal ecologist at the Institute of Ecosystem Studies in Millbrook,
New York, found in a recent survey that infected ticks were seven times as
prevalent on one- and two-acre lots as they were on the fifteen-acre lots of
yesteryear. The intriguing case study of a little boy who contracted Lyme
disease while on a Boy Scout outing is described in Chapter 13.
From chapter 13:
Case Study: Justin
Justin was a nine-year-old who had just earned his first badge as a Cub
Scout. After he attended scout camp that summer and achieved his second
badge, he informed his parents he intended to work toward becoming an
Eagle Scout. His parents were pleased and hoped his five-year-old brother
would follow in his footsteps.
Around Christmas time though, Justin’s whole demeanor changed. He
began having trouble at school, often forgetting his homework. Sometimes
he forgot to take out the trash and do his other chores. One morning, Justin’s
brother told his parents that Justin was not sleeping and was walking around
the house during the night. Justin’s folks began to worry that there was
something going on at school that their son was not talking about. When
they confronted him, he denied anything unusual was happening there.
One day Justin began to complain that he had tingling in his hands
and feet. Sometimes he would complain that they burned. His mother
immediately took him to the pediatrician, who could find nothing wrong.
Before long, the boy developed bladder problems. Sometimes he wet his
pants, and other times he went for long periods without urinating at all. He
was miserable and cranky.
Again, his parents took him to the pediatrician, but the doctor could
find nothing wrong. He referred Justin to both a urologist and a neurologist
at the local children’s hospital. Neither of these specialists could determine
the cause of Justin’s problems, although after numerous tests, the
neurologist did find that he was indeed suffering from impaired short- and
long-term memory, which accounted for his forgetfulness. She also documented
evidence of numbness and decreased sensory perception. Still, the
cause was undetermined.
Now Justin’s parents were worried sick and begged the neurologist to
do something. She put Justin on a regimen of multivitamins and screened
him for diabetes and thyroid problems. Not only did the boy’s symptoms
not improve, but he was also in a foul mood all the time and becoming less
and less motivated to do anything. He wouldn’t even attend Boy Scout meetings,
the one thing he’d always loved.
Fortunately for Justin, his mother and David’s mother, Hilary, shared
a carpool. Noting Justin’s frequent absences, Hilary inquired about his health
and his mother confided in her. Hilary told Justin’s mother about how she’d
solved David’s mystery malady using the Eight Steps. Justin’s mother decided
it was time to take matters into her own hands.
She bought a notebook, listed Justin’s symptoms in detail, and completed
all the steps until she reached Step Five (past and present mental or
physical problems). At that point, she decided to sit her son down and discuss
it with him directly. She asked Justin to “play detective” and help solve
this mystery. Justin perked up at the thought of playing the game. When
his mother asked him if anything unusual had happened to him in the
past—a symptom perhaps—that he’d forgotten to tell her about, Justin
cheeks reddened. She assured him that he would not be in trouble and
reminded him of what she had said consistently in the past: he would never
be in trouble if he told the truth.
Reluctantly, Justin confided that while he was away at scout camp, he’d
gotten a “rash.” Because it was in his groin, he refused to show it to the camp
counselors. He was too embarrassed to discuss it with anyone. Justin’s
mother did not know if this was relevant, but following the instructions of
the Eight Step method, she made a note of it and asked him to describe it
to her. He said it was weird because it looked like a bull’s-eye, or an archery
target.
Together they also recalled that three months prior to that Justin had
had a case of the “flu,” with fever, chills, achiness, fatigue, and a sore throat.
It went away, but his mom thought it was odd that his brother hadn’t caught
it. This was especially surprising because she’d found the brothers spitting
at each other and roughhousing in Justin’s bed while he was sick.
When Justin’s mom had completed all Eight Steps, she returned to the
pediatrician. His first question after he heard about the targetlike rash that
had occurred at camp was where the camp was located. When he heard it
was in Connecticut, he ran some special blood tests and Justin’s diagnosis
was revealed.
Justin had contracted Lyme disease—a tick-transmitted illness where
the symptoms often do not appear for several months after the initial infection.
Lyme disease usually begins with the target like rash, but no one had
observed it in Justin’s case because he had been bitten in the groin and was
too embarrassed to show it to anyone.
This disease is often difficult to diagnose because it mimics other diseases
and may be asymptomatic until it reaches later stages. Then, if left
untreated, chronic problems may develop like the ones Justin was experiencing.
Although less common, chronic neurological involvement may
become apparent months after the onset of infection, including bladder
involvement, distal paresthesias (burning and tingling of the hands and feet),
and sleep and mood disorders.
Fortunately, Justin’s case was caught in time to be treated without permanent
ramifications, thanks to the Eight Steps and his mother’s diligence.
Conclusion
Children’s mystery maladies are often a little more difficult to solve because
of the difference between signs (an observable measurable indication of illness
like a fever or rash) and symptoms (a sensation that is perceived by the
patient and normally not measurable like pain) as we discussed in Chap-
ter 3. You may be able to observe the “signs” of your child’s malady but you
will have to find a creative way to elicit all of his or her symptoms. Justin’s
mom was on the right track when she engaged Justin in the game of detective,
and you may have to do the same. You know your child best and what
will work to get him or her to help you. Still, children’s mystery maladies
are as solvable as those of adults using the Eight Steps to Self-Diagnosis
The Diagnosis Dilemma
As long as diagnosis is in doubt, cause and treatment are guesswork.
—Melvin Gray, M.D.
Modern medicine has extended our life span and protects us from the
epidemics that once wiped out millions of people. High-tech medical facilities
dot the national landscape, billions of dollars are spent on research, and
the constant advances in diagnostic equipment and testing continue to
reveal hidden secrets of the human body. Our doctors are trained in medical
schools that are indisputably the best in the world.
To some of you, the idea that doctors can make diagnostic mistakes
when they have all this research and technology at their disposal may be
inconceivable. Perhaps like millions of Americans you believe that you’re
getting good medical care from your own physician, and we would generally
agree. But if you are reading this book, chances are you or someone you
love is suffering from unexplained medical symptoms.
So if you think doctors can accurately diagnose every patient each time
one walks into their offices, think again. We are about to share some tragic
stories and startling statistics in this chapter. They are not meant to scare
you. Rather, we hope that once you understand the extent of the diagnosis
dilemma facing doctors and patients today, you will be encouraged to take
charge of your health and become more proactive in your search for the correct
diagnosis and treatment.
In her book, Cancer Schmancer, television star Fran Drescher writes
about her frustrating two-year search for a diagnosis that took her to eight
physicians, all of them highly reputable. They gave her erroneous diagnoses
and failed to check her for cancer because she did not “fit the profile.” It was
only through her own persistence that she finally received the correct diagnosis
and treatment.
Unfortunately, this celebrity case is not a rare or isolated instance. Consider
the case of Laverne, an older, intelligent, and highly respected nurse.
She visited the doctors at her health maintenance organization (HMO)
repeatedly for more than a year with symptoms that made her concerned
about the possibility of cancer. She shared her “intuitions” that something
was wrong, but her doctors didn’t think any special testing was indicated,
so her HMO wouldn’t pay for it. The fact that her own medical colleagues
didn’t take her seriously caused tremendous psychological distress.
Laverne, like so many undiagnosed patients, succumbed to the belief
that it must be “all in her head.” It was only when she reached the advanced
stages of her cancer that her doctors finally realized their mistake. By then
it was too late; Laverne passed away within months. The local nursing community
mourned her death both as a personal tragedy and as a failure of the
medical system they all worked for.
If you’re still not convinced about how often these kinds of tragedies
can happen, consider the shocking findings from an article in the Journal
of the American Medical Association ( JAMA). A study of autopsy reports covering
a ten-year period found that doctors failed to diagnose serious cases
of cancer in one of every ten patients. In half of these cases, the untreated cancer
caused the patient’s death.
Unfortunately, the huge margin of diagnostic error in medicine is not
limited to cancer. Research studies, for example, reveal that at least a quarter
of a million deaths are medically induced every year; that is, four times
as many people die from misdiagnosis and other medical mishaps than died
in the entire Vietnam War.
The Critical Proportions of the
Diagnosis Dilemma
A survey conducted by the Harvard School of Public Health and the Henry
J. Kaiser Foundation examined the views of eight hundred American doctors
and twelve hundred adult patients. Fully 35 percent of the physicians
said that either they or members of their family had experienced medical
errors in the course of being treated. Most said the errors had “serious consequences”
such as death, long-term disability, or severe pain. Three in ten
of these doctors had seen an error that caused serious harm to patients (outside
of their families) within the past year.1
A recent study published in Chest, the journal of the American College
of Chest Physicians, showed that one out of every five patients who died in
medical intensive care units (ICUs) was misdiagnosed. An accurate diagnosis
would have resulted in different treatment that might have saved
patients’ lives. This study was conducted at the prestigious Cleveland Clinic
Foundation in Ohio, whose state-of-the-art diagnostic facilities are considered
among the best in the world. Other research indicates that this misdiagnosis
rate is typical of ICUs nationwide.
In another JAMA issue, the largest study ever conducted on peripheral
artery disease (which is believed to affect eight to ten million Americans and
Western Europeans) revealed that almost 30 percent of people with this condition
are undiagnosed, underdiagnosed, or undertreated.
In a random study of medical practices conducted by two HMOs, 14
percent of patients labeled with hypertension (high blood pressure) did not
have this condition. Other error rates were 44 percent for coronary artery
disease, 50 percent for congestive heart failure, and 33 percent for arterial
fibrillation. The nineteen-physician practice receiving this “report card” is
among the most reputable in Philadelphia.
The National Library of Science reported a 1989 case study of 1,000
patients followed in an internal medicine clinic in Maryland over a threeyear
period. Eighty-four percent of those patients (840 out of 1,000) could
not be diagnosed—a staggering statistic.
In another study at the University of Iowa Medical College, half of the
more than four hundred patients interviewed reported having unexplained
physical symptoms “usually” or “always.”
Older patients often experience diagnostic nightmares. For example,
the asthma death rate in those over sixty-five is ten times the death rate for
the same condition in younger adults. According to researcher Paul L.
Enright, M.D., of Tucson, “Diagnosis in these patients is only half as good
as it should be. Fifty percent of elderly asthmatics have not been diagnosed.”
In his bestselling book Head First, Norman Cousins discussed a study
of the medical records of elderly cardiac pacemaker recipients at Albert Ein-
The Diagnosis Dilemma
Becoming Your Own Medical Detective
stein Medical Center in Philadelphia which revealed “twenty percent of
implantations to have been completely unjustified and done on a misdiagnosis
of information.”
If we generalize from these alarming statistics to the U.S. population
as a whole, it would not be unreasonable to assume that literally millions of
patients are undiagnosable, misdiagnosed, or diagnosable but not yet identified.
And while the plight of undiagnosed patients is bad enough, the
misdiagnosed patient may be a walking time bomb. Medications and procedures
meant to cure the misdiagnosed condition can backfire and will
often cause further damage, while the real (undiagnosed) condition is left
untreated.
Case Study: Penny
It took six years and visits to multiple doctors for Penny, a woman in her forties, to
finally receive the correct diagnosis and treatment. She suffered from numerous
symptoms that appeared at different times over a six-year period, including dry eyes,
pleurisy, aches and pains, flashing lights in the periphery of her vision, and rashes
that looked like small bruises. The problem was that Penny’s doctors never treated
her array of symptoms as a whole. Instead, each symptom was treated individually:
artificial tears for her eyes, ibuprofen for her aches, dermatological creams for her
rash, and medications to treat migraines.
Because she was not properly diagnosed, her condition steadily declined. It
was not until her symptoms became so severe that she had become bedridden,
receiving massive doses of intravenous steroids, that her doctors finally connected
her diverse symptoms to make the correct diagnosis of Sjögren’s syndrome, an
autoimmune disease in which the body’s immune system mistakenly attacks its own
moisture-producing glands.
Why Doctors Can’t Always Make the
Correct Diagnosis
In his article “Mystery Maladies Pose Challenge for Doctors and Patients,”
Arthur Hartz, M.D., candidly explains, “Doctors have more of a medical
model for treating strep throat or heart disease . . . but when it comes to
unexplained illnesses or symptoms, they don’t really have an approach that
is established.”
As illustrated by Penny’s story, even diagnosable diseases are often difficult
for doctors to identify, and this is especially true for many immune
and autoimmune disorders. According to the American Autoimmune and
Related Diseases Foundation (AARD), as many as fifty million Americans
(75 percent of them women) may suffer from autoimmune disorders, which
are notoriously difficult to diagnose in spite of advances in medical technology.
“Women have to see five or six doctors before they find someone
who can tell them what they have,” the AARD report states. Clearly,
“. . . the biggest obstacle that patients with autoimmune disease face is just
getting a diagnosis.”
Well-documented diseases such as lupus are elusive and difficult to
diagnose, so patients with these conditions are often dismissed out of hand,
with doctors telling them “it’s all in your head” (in the same way that multiple
sclerosis sufferers used to be referred to as “fakers” before the advent of
the technology that could prove the existence of this disease). Part of the
problem with such diseases, as Jeff Baggish, M.D., explains, is that “almost
half of all persons afflicted with an autoimmune disease experience periods
of spontaneous remission and exacerbation as opposed to a continuous worsening
of symptoms.” Unless a doctor is particularly knowledgeable or can
take the time to follow a patient closely, it is difficult to find the correct
diagnosis.
Doctors themselves will admit that medical technology doesn’t necessarily
guarantee diagnosis. For example, Dr. Kurt Kroenke, M.D., senior
scientist at the prestigious Regenstrief Institute for Health Care, warns,
“Only half of all symptoms evaluated by a doctor have a discrete physical
cause and at least one-third are medically unexplained.”
What’s the Answer?
Dr. Rosenbaum and I are two of the staggering number of patients who have
been trapped in the diagnosis dilemma. We know that if you’re reading this
book, you’ve experienced the frustration of having medically unexplained
symptoms. You’ve probably been to more than one physician complaining
of your symptoms. You’ve received no diagnosis at all or (worse yet) con-
The Diagnosis Dilemma 7
8 Becoming Your Own Medical Detective
tradictory diagnoses. The medications you’ve been prescribed don’t seem to
help, and some of them may make you feel worse. As hard as you try, your
symptoms make it difficult to keep functioning and meet all your responsibilities;
perhaps your family life is being affected or your job is in jeopardy.
We have written this book to offer you hope, and the best part is that
you can help yourself !
Making a correct diagnosis is like solving a crime. Physical exams and
laboratory tests can eliminate some of the suspects, but the culprit is still at
large. The evidence must be tracked down and documented with precision.
In some cases, it might literally be a life-and-death matter to find it. And
you cannot be totally reliant on your doctors to do it. Among other reasons,
they simply may not have the time to help you in the way you need. You
must learn to become your own medical detective and follow that evidence
trail in order to find your answers.
This book is in no way intended to replace your physician. Rather, your
doctor will become your consultant much in the way Dr. Rosenbaum has
become mine (Lynn’s). But you will have to assume the main responsibility
for your own health care. Dr. Pamela Gallin, one of the world’s leading pediatric
surgeons, writes in her book How to Survive Your Doctor’s Care (Lifeline
Press, 2003), “Now, more than ever, the onus is on the patient to ensure
proper medical treatment.” In the following chapters, we’ll discuss all the
aspects of good medical detective work, including how to do some of your
own medical research and sift through that information in order to consider
all the possibilities while keeping an open mind. We will reveal our revolutionary
Eight Steps to Self-Diagnosis, the centerpiece of this program, and
explain how to choose the right physicians and create productive partnerships
with them as you go through the process. If you’re willing to put in
the time and effort, we’ll show you how to improve your chances of quickly
getting to an accurate diagnosis.
Now let’s take a look at some of the pitfalls that contribute to the existing
diagnosis dilemma.
****CONTENT SKIP***
A different set of illnesses of an environmental nature appear to be a
by-product of disturbance of ecosystems. This would include, for example,
occurrences of Lyme disease in suburbia. Given that Borrelia burgdorferi, the
bacteria that causes Lyme disease, has been around a long time, why are people
suddenly being diagnosed with it? In open woodlands, foxes and bobcats
keep a lid on the bacteria by hunting the mice that carry it, but when
these predators vanish with our woodlands as developers clear lots for new
subdivisions, the mice and their ticks proliferate unnaturally. Richard Osterfield,
an animal ecologist at the Institute of Ecosystem Studies in Millbrook,
New York, found in a recent survey that infected ticks were seven times as
prevalent on one- and two-acre lots as they were on the fifteen-acre lots of
yesteryear. The intriguing case study of a little boy who contracted Lyme
disease while on a Boy Scout outing is described in Chapter 13.
From chapter 13:
Case Study: Justin
Justin was a nine-year-old who had just earned his first badge as a Cub
Scout. After he attended scout camp that summer and achieved his second
badge, he informed his parents he intended to work toward becoming an
Eagle Scout. His parents were pleased and hoped his five-year-old brother
would follow in his footsteps.
Around Christmas time though, Justin’s whole demeanor changed. He
began having trouble at school, often forgetting his homework. Sometimes
he forgot to take out the trash and do his other chores. One morning, Justin’s
brother told his parents that Justin was not sleeping and was walking around
the house during the night. Justin’s folks began to worry that there was
something going on at school that their son was not talking about. When
they confronted him, he denied anything unusual was happening there.
One day Justin began to complain that he had tingling in his hands
and feet. Sometimes he would complain that they burned. His mother
immediately took him to the pediatrician, who could find nothing wrong.
Before long, the boy developed bladder problems. Sometimes he wet his
pants, and other times he went for long periods without urinating at all. He
was miserable and cranky.
Again, his parents took him to the pediatrician, but the doctor could
find nothing wrong. He referred Justin to both a urologist and a neurologist
at the local children’s hospital. Neither of these specialists could determine
the cause of Justin’s problems, although after numerous tests, the
neurologist did find that he was indeed suffering from impaired short- and
long-term memory, which accounted for his forgetfulness. She also documented
evidence of numbness and decreased sensory perception. Still, the
cause was undetermined.
Now Justin’s parents were worried sick and begged the neurologist to
do something. She put Justin on a regimen of multivitamins and screened
him for diabetes and thyroid problems. Not only did the boy’s symptoms
not improve, but he was also in a foul mood all the time and becoming less
and less motivated to do anything. He wouldn’t even attend Boy Scout meetings,
the one thing he’d always loved.
Fortunately for Justin, his mother and David’s mother, Hilary, shared
a carpool. Noting Justin’s frequent absences, Hilary inquired about his health
and his mother confided in her. Hilary told Justin’s mother about how she’d
solved David’s mystery malady using the Eight Steps. Justin’s mother decided
it was time to take matters into her own hands.
She bought a notebook, listed Justin’s symptoms in detail, and completed
all the steps until she reached Step Five (past and present mental or
physical problems). At that point, she decided to sit her son down and discuss
it with him directly. She asked Justin to “play detective” and help solve
this mystery. Justin perked up at the thought of playing the game. When
his mother asked him if anything unusual had happened to him in the
past—a symptom perhaps—that he’d forgotten to tell her about, Justin
cheeks reddened. She assured him that he would not be in trouble and
reminded him of what she had said consistently in the past: he would never
be in trouble if he told the truth.
Reluctantly, Justin confided that while he was away at scout camp, he’d
gotten a “rash.” Because it was in his groin, he refused to show it to the camp
counselors. He was too embarrassed to discuss it with anyone. Justin’s
mother did not know if this was relevant, but following the instructions of
the Eight Step method, she made a note of it and asked him to describe it
to her. He said it was weird because it looked like a bull’s-eye, or an archery
target.
Together they also recalled that three months prior to that Justin had
had a case of the “flu,” with fever, chills, achiness, fatigue, and a sore throat.
It went away, but his mom thought it was odd that his brother hadn’t caught
it. This was especially surprising because she’d found the brothers spitting
at each other and roughhousing in Justin’s bed while he was sick.
When Justin’s mom had completed all Eight Steps, she returned to the
pediatrician. His first question after he heard about the targetlike rash that
had occurred at camp was where the camp was located. When he heard it
was in Connecticut, he ran some special blood tests and Justin’s diagnosis
was revealed.
Justin had contracted Lyme disease—a tick-transmitted illness where
the symptoms often do not appear for several months after the initial infection.
Lyme disease usually begins with the target like rash, but no one had
observed it in Justin’s case because he had been bitten in the groin and was
too embarrassed to show it to anyone.
This disease is often difficult to diagnose because it mimics other diseases
and may be asymptomatic until it reaches later stages. Then, if left
untreated, chronic problems may develop like the ones Justin was experiencing.
Although less common, chronic neurological involvement may
become apparent months after the onset of infection, including bladder
involvement, distal paresthesias (burning and tingling of the hands and feet),
and sleep and mood disorders.
Fortunately, Justin’s case was caught in time to be treated without permanent
ramifications, thanks to the Eight Steps and his mother’s diligence.
Conclusion
Children’s mystery maladies are often a little more difficult to solve because
of the difference between signs (an observable measurable indication of illness
like a fever or rash) and symptoms (a sensation that is perceived by the
patient and normally not measurable like pain) as we discussed in Chap-
ter 3. You may be able to observe the “signs” of your child’s malady but you
will have to find a creative way to elicit all of his or her symptoms. Justin’s
mom was on the right track when she engaged Justin in the game of detective,
and you may have to do the same. You know your child best and what
will work to get him or her to help you. Still, children’s mystery maladies
are as solvable as those of adults using the Eight Steps to Self-Diagnosis
Subscribe to:
Comments (Atom)