Personal Blog # 33 … Concerns About AD? Be Sure to See the Right Doctor!
A friend of mine recently told me about the problems
she went through trying to obtain an accurate diagnosis for the causes of increasingly
worsening gastrointestinal issues her daughter was facing. Despite being seen and treated by her primary
care doctor, an internist, a gastroenterologist, and numerous MDs in hospital
ERs, her issues continued to worsen. Why? It turned out that for many years she was
repeatedly misdiagnosed and given medications that were not helpful. Conditions such as anemia, appendicitis, nervous stomach,
stress, hemorrhoids, and ulcerative colitis are just some of the misdiagnoses
given to people who actually have Crohn’s.
At a certain point, my friend’s daughter was seen by
a gastroenterologist with experience diagnosing and treating patients with Crohn’s
disease. Once properly diagnosed and
treated for Crohn’s disease, there was immediate improvement in her condition
and ability to function more normally.
According
to the Mayo Clinic website, “Crohn's disease is a type of inflammatory bowel
disease (IBD). It causes swelling of the tissues (inflammation) in your
digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue,
weight loss and malnutrition.
Inflammation caused by Crohn's disease can involve different areas of
the digestive tract in different people, most commonly the small intestine.
This inflammation often spreads into the deeper layers of the bowel. Crohn's disease can be both painful and
debilitating, and sometimes may lead to life-threatening complications. There's
no known cure for Crohn's disease, but therapies can greatly reduce its signs
and symptoms and even bring about long-term remission and healing of
inflammation. With treatment, many people with Crohn's disease are able to
function well. (https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304)
Doctors
misdiagnosing various diseases is nothing new, and my friend’s daughter was
fortunate to finally be with a doctor who correctly diagnosed and treated her
condition. However, there are steps one can
take to help minimize chances of misdiagnoses.
By reading about some of the mistakes I made with my wife, some readers
may be able to avoid similar mistakes with their loved ones when there are
concerns about AD.
Readers
of my articles and blog columns already know that my wife, who died in 2016 due
to AD, had been misdiagnosed for several years.
When I first began to notice behavioral changes in my wife and grew
increasingly concerned that those changes might be signs of AD, we discussed
these changes with our primary care doctor.
That doctor administered an MMSE … Mini-Mental State Evaluation … a very
common test used by doctors to screen for possible AD. My wife aced the test with a perfect score. Unfortunately, I didn’t know that the MMSE
was never intended to be used to screen for possible AD because, among other
reasons, it does not test higher order thinking skills. Our doctor gave my wife a prescription to
reduce stress and anxiety.
My
mistake was thinking that all was well based upon that MMSE score. Even though our family physician said he was
not an expert in AD, he could not detect any problems that, in his opinion,
would warrant any additional testing.
Months
later, and observing new and worsening behaviors that I now thought could
possibly be signs of AD, we met with the most highly respected neurologist in
my geographic area, chair of the neurology department at a large and well-respected
hospital. I was also quickly educating
myself about AD by visiting various internet sites such as those of the NIH,
Mayo Clinic, Johns Hopkins, and the Alzheimer’s Association.
I
was maintaining weekly logs noting new or worsening behaviors that I felt were
clear signs of Mild Cognitive Impairment (MCI), if not early signs of
Alzheimer’s disease (AD). During the
next 12-18 months, at every visit with every doctor I shared my latest logs, but doctors dismissed my logs without comment
… often not even bothering to take time to skim or read what I had
written. The neurologist treating my wife
for stress, for anxiety, and depression then also had her meet weekly with a
clinical psychologist.
My
mistake was thinking that any neurologist or clinical psychologist would be
easily able to diagnose AD. My wife’s neurologist,
a specialist in other brain disorders, was not an expert in AD. My wife’s psychologist was a specialist in
treating anxiety disorders, not AD. Signs
of AD that were obvious to me were misinterpreted by them and her diagnosis
remained stress, then anxiety, and then depression … not AD. I shared what the neurologist and clinical
psychologist were saying about my wife with our primary care doctor, telling
him that what I was observing seemed to clearly indicate early stages of
AD. Our doctor said that, based upon the
behaviors I was observing, it was possible that my wife was in early stages of
AD … but he deferred to the opinion of the neurologist who had much more
experience with brain issues.
My
mistake was not being strong enough to challenge my wife who continued to
resist going for a second opinion. We “fought” over it, but
invariably she’d adamantly argue that she didn’t need to see another doctor and
I couldn’t force her to do so. I backed
down each time, but I should never have backed down. My wife said that since our family doctor, the
neurologist, and the clinical psychologist all agreed that her problems were
due to stress, anxiety, and/or depression … not MCI and certainly not AD … there was no need to
get another opinion.
I
was only able to bring my wife for a second opinion after I decided to confront
the psychologist in my wife’s presence after a particular session. I asked if his wife was being treated for
stress, anxiety, and/or depression … and if his wife not only was not improving
but was actually getting worse … would he take his wife for a second
opinion? When he said, red-faced, that yes,
he would do so, I turned to my wife and asked, “Now will you let me take you
for a second opinion?”
I
was not going to repeat my mistakes of the past. I had already gathered information on three
doctors whose entire practices were focused on diagnosing and treating people
with AD. Two were geriatric
psychiatrists affiliated with an Alzheimer’s Disease Research Center (ADRC) and
one was a neurologist at another major hospital. I showed the information on all three doctors
to my wife and she chose one of the two geriatric psychiatrists. We made an appointment and when the doctor
learned that I had been keeping weekly logs of her behaviors, he asked me to
email copies of those logs prior to our visit.
We then had several email exchanges about those behaviors, and even
before our first visit I felt that we were now finally seeing the right
doctor!
My
wife’s initial 3+ hour evaluation included the MMSE but also many, many more
tests. After just thirty minutes spent evaluating my wife, the geriatric
psychiatrist said that my wife was definitely not suffering from stress,
anxiety or depression. He wanted her
taken off all of those medications, saying that ”something is going on in her
brain’s frontal lobe.” One month after
all of her testing was completed … extensive cognitive testing, blood work,
brain scans, physical exams, etc. … I received a call from the ADRC that, after
a team meeting discussing all of her test results, my wife was diagnosed with
probable early onset AD.
What
is my advice to people with concerns about possible signs of AD in their loved
ones? Don’t visit just any doctor. See only a doctor experienced in diagnosing and
treating people with AD. Not all brain
doctors … not even specialists such as neurologists and geriatric psychiatrists
… have enough experience with AD to diagnose it properly. Make sure you see a doctor who can do this.
And
one more thing, something that is very sad to note. Not all ADRCs will even take the time to make
an initial diagnosis for people with concerns about possible AD symptoms! I only recently learned about a friend who
felt that he may be experiencing early signs of AD. He made an appointment to see a specialist at
his local ADRC, but they refused to see him once they learned that he did not yet
have “sufficient” testing by other doctors first … brain scans, blood work,
etc.
I emailed the following question to the person in charge of ADRCs
at the National Institutes of Health: “Can my friend simply go to an ADRC for a
complete evaluation, or must he first undergo imaging and blood work and other
tests by his internist or neurologist. So far he is acing the MMSE given
to him by his internist but yet he recognizes he is still having cognitive
problems. Can he just get a consult at his local ADRC? Following is the response I received:
“Thank you for contacting the federal
government’s National Institute on Aging (NIA), part of the National Institutes
of Health (NIH) at the U.S. Department of Health and Human Services. NIA was
established to improve the health and well-being of older adults through
research. The institute conducts and supports basic, clinical, and social and
behavioral research on aging and the special problems and needs of older adults
and is the lead federal agency for Alzheimer’s disease and related dementias
research. We appreciate your
interest in the services provided by the Alzheimer’s Disease Research
Centers. While NIA provides funding to these Centers, we are not involved
in their daily operations. Therefore, you will need to contact each Center you
are interested in to inquire about their protocols for diagnosis and testing.”
That response is very unfortunate.
An ADRC has precisely those experts who should be available to meet with
people who have the earliest AD concerns.
Months of delay before seeing such experts will undoubtedly lead to
increased mental anguish. In addition,
the need to undergo additional expensive testing is a critical issue if one
does not have outstanding health insurance.
Conducting initial AD diagnoses are too important … they should be included
in all ADRC mission statements and protocols for diagnosis and testing.
One more thing. If you do go to a
doctor who administers the MMSE and makes a decision solely based upon those
test results, please go to another doctor … asap! There are many evaluative instruments better
than the MMSE to help in diagnosing MCI or AD.
No doctor should still be using the MMSE, a test created in 1975, as a
sole test to diagnose probable AD. A
score of 24 or less on the MMSE is considered indicative of possible cognitive
impairment. As I noted, my wife continually
got a score of 30 in her earliest years of undiagnosed AD.
But even two years after being diagnosed with AD at the ADRC, my wife was still
scoring 25 or higher on the MMSE! Enough
said.
