The First Rule on Second Opinions:
They’re Always Worth Considering in the Wake of a Serious Diagnosis
By Mary Adam Thomas
“Frontotemporal dementia is often misdiagnosed as a psychiatric problem or as Alzheimer’s disease.” —The Mayo Clinic
“Lewy body dementia’s symptoms can closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s.”
—The Lewy Body Dementia Association
“Because the symptoms (of normal pressure hydrocephalus) are similar to those of other disorders such as Alzheimer’s disease, Parkinson’s disease, and Creutzfeldt-Jakob disease, the disorder is often misdiagnosed.”
—The National Institute of Neurological Disorders and Stroke
The challenges that come with memory loss are difficult enough. When a definitive diagnosis is hard to pin down, it complicates things even further. Unfortunately, there are several realities among the so-called “dementing disorders”: there are many of them, their symptoms often mimic one another, and doctors sometimes disagree when it comes to diagnosing them. However, treatment options and coping strategies do vary by condition, so there is enormous value in an accurate diagnosis.
For those reasons and more, patients and caregivers dealing with dementia—in any form and identified by any label—should always consider pursuing a second opinion.
The Right of Every Patient and Caregiver
It’s a good idea to seek a second opinion following any serious medical assessment, whether it’s a diagnosis or a recommended course of treatment. Patients and family members are becoming increasingly engaged in their own health care, and seeking the input of more than one physician is more common than ever. Following such a serious diagnosis as Alzheimer’s disease, it might even be considered irresponsible not to pursue the expertise of at least one other doctor.
“People sometimes worry they’re going to offend their doctors by bringing up the subject of second opinions,” says Aimee Chagnon, MD, a neurologist who runs a private practice in Sonoma, Calif. “I tell people that it’s not going to hurt my feelings or insult me. I don’t want anyone to have any kind of lingering doubt or question whether they could have done something different—especially with a devastating diagnosis.”
If you are interested in seeking a confirming diagnosis and your original physician objects to the idea, patient advocacy experts consider such resistance a red flag and an indication that the doctor is more concerned with personal ego than patient outcomes. “It doesn't matter if the doctor likes you or is annoyed with you just because you want a second opinion. Keep your eye on the ball,” urges Andrew Schorr, founder of the advocacy portal Patient Power and author of The Web-Savvy Patient. “This is about you or your loved one having the best possible health and quality of life. That’s what matters.”
Many Dementias Look the Same
In her practice, Dr. Chagnon has seen plenty of patients whose symptoms have been difficult to place into tidy diagnostic categories. Having issued initial, confirming and alternative diagnoses for numerous brain disorders, she knows that the nuances of each case can affect how it is labeled, managed, and treated.
“It’s not uncommon for people to be diagnosed with Alzheimer’s and end up having Lewy body dementia, which is a combination of symptoms that look like Parkinson’s disease but involve quite a bit of hallucination and significant behavioral changes,” she says. “The other thing we often see is people being diagnosed with Alzheimer’s who actually have frontotemporal dementia, which can lead to behavioral changes and language problems. When those things happen before memory issues are obvious, it can actually be misdiagnosed as a psychiatric issue.”
Normal pressure hydrocephalus, or excessive fluid on the brain, is another condition that causes memory and balance problems that mimic those of Alzheimer’s disease, notes Dr. Chagnon. The important difference between hydrocephalus and Alzheimer’s, she points out, is that the former is treatable when caught early enough. “By the time hydrocephalus gets obvious, it’s sometimes too late to do anything,” she says. “So we always encourage people with worrisome symptoms to get evaluated and get brain imaging if at all possible.”
Properly identifying these subtle distinctions among conditions, she explains, can benefit patients and caregivers alike. Memory, balance and behavioral issues could also be symptoms of a thyroid problem, a vitamin deficiency or a slow-growing tumor. “Those are things we can do something about before they cause irreversible damage,” says Dr. Chagnon. In these cases, second opinions that confirm initial diagnoses help clarify the proper way forward.
Grappling with the Decision
Given the emotionally wrenching nature of memory loss, families can feel overwhelmed just by the realities they face every day. Adding potential stress by seeking a second diagnostic opinion might seem like too much to bear.
“If a family is really struggling with an Alzheimer’s diagnosis or if they have reason to question it, I’ll remind them that they always have the option of getting a second opinion,” explains Patricia Brooks, LCSW, PhD, a psychotherapist who counsels individuals and families experiencing anxiety or depression related to illness, chronic pain, and cognitive disorders. “But sometimes, people question a diagnosis because they’re in denial, in which case we need to spend time educating them as a way of helping them understand and accept the diagnosis.” In those cases, she works with caregivers to facilitate realistic expectations and help them prepare for and adapt to the changing abilities of the patient.
As necessary, Dr. Brooks helps identify resources for her clients, assists them in pursuing additional medical opinions and contributes her own expertise to help determine the most effective next steps. “If I have a question about a client’s diagnosis, I ask whether a neurologist or other specialist was consulted, I look at what kinds of tests were done, whether an MRI or CAT scan was done, etc. Then I may recommend that they seek a second opinion to take a more thorough look at what’s going on,” she says.
Coping with the Findings
When a second opinion confirms an initial diagnosis, it can clear the way for patients and caregivers to begin focusing on managing the condition rather than questioning it.
However, when a second opinion contradicts an initial diagnosis, it’s important to figure out why. “If conflicting diagnoses come from two different neurologists, then I would ask the two physicians to discuss the case,” Dr. Chagnon says. “Many times, especially early on, symptoms of these conditions can fluctuate from day to day. Patients will have very good days and look great, and the very next day they’ll turn around and behave totally differently. When doctors actually communicate and report to one another what they saw and what family members describe as normal, then you can often get consensus on a diagnosis.”
Dr. Chagnon recommends that families also include the patient’s primary care doctor in any group discussions whenever possible. “Even though the primary isn't spending a lot of time with the patient, it can be helpful,” she says. “If we talk to each other, we can usually come to the right conclusions.”
Weighing the Value of Neuro-Psych Testing
When a definitive diagnosis is particularly difficult to come by, memory loss patients and caregivers have the option of requesting neuropsychological evaluations.
Some patients and caregivers pursue neuropsychological evaluations when their doctors have difficulty reaching a definitive diagnosis. “Many patients fall into the cortical dysfunction categories, which have red f lags that neurologists should be able to identify. But if that’s not enough to clearly identify what’s going on, then thorough neuro-psych testing might be worthwhile,” says Dr. Chagnon. “It’s a long process and some patients find it tedious, but it can really be worth it because it allows us to see what parts of the brain are really affected.”
Neuropsychological testing, according to Dr. Chagnon, reveals where in the brain the problems reside, which helps classify the pathology. For example, if early testing reveals frontal brain dysfunction, that’s unusual for Alzheimer’s disease, which doesn't affect the front portions of the brain until later in the disease’s progression. If, on the other hand, testing reveals a mixed pattern of dysfunction, it might be sign of vascular disease and should be treated accordingly.
Neuro-psych testing can also help shed light on near- and long-term realities. “Sometimes, I’ll recommend a neuropsychological evaluation so that we can make a determination about a treatment or care plan,” says Dr. Brooks. “Identifying the client’s strengths along with their liabilities can help families understand what level of care will be required and what coping strategies we can begin to put into place for caregivers.”
The Power of Information
Memory loss is all about unanswered questions. Second opinions can help patients and caregivers feel more in control by arming them with information. Bringing a fresh medical perspective to a case doesn’t always change its outcome, but it often helps home in on a patient’s condition in ways that can have a positive impact on care
“We don’t really have vastly different ways to treat the different forms of dementias; it’s more that we can better anticipate some of the symptoms and the problems, and what the prognoses are going to be, when we know exactly what we’re dealing with. If we can help the people who will care for the patients and give them some ideas on how these problems can be mitigated, there’s great value in that.” —Aimee Chagnon, MD, Neurologist
“If a cognitive screening raises red flags that point to dementia, I refer to a neurologist to get more information about root causes. Is it a brain tumor, dementia, delirium, a UTI, is there history of alcoholism? All of those things can cause changes in cognitive function. It’s important to really explore that diagnosis of dementia to find out what’s actually going on. It’s essential that we get to a clear diagnosis before formulating a treatment plan.” —Patricia Brooks, LCSW, PhD, Psychotherapist
“It’s important to seek a second opinion following a diagnosis as serious as Alzheimer’s because research continues to evolve. Does your doctor know all the latest? Could there be something he or she hasn't learned yet, or a clinical trial he or she doesn’t know about? If so, could that be something that could help you or your loved one? Why take the risk by not seeking a second opinion and finding out?” —Andrew Schorr, Patient Advocate