3 posts tagged “misdiagnosis”

“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

Posted August 30th, 2018 by

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician.

Out with the old

Bernadette lives in remote area in the Great Lakes Region of New York. The first PD symptom she noticed was her handwriting getting small (a common early symptom of PD known as micrographia) — and her first doctor dismissed it as “writer’s cramp.”

When she began having tremors in her hand, she started seeing a neurologist with a strong reputation in Syracuse, about a 40 minute drive from her home.

“He’s very well-respected in the area,” she says. “In fact, a lot of the [other] doctors won’t step on his toes.”

Bernadette was experiencing serious side effects with some of her PD medications — including compulsive gambling out of the blue (a reported side effect of Mirapex) — but her neurologist asked her very few questions about how she was feeling, and never raised the topic of side effects.

“My husband didn’t like him,” Bernadette says of her old doctor. “I didn’t know any better. There were cues I should’ve picked up on long before the 14 years.”

Bernadette got a taste of other Parkinson’s care when she enrolled in PD telemedicine trials at the University of Rochester (U of R), where the staff is “amazing,” she says.

Bernadette says she was experiencing terrible dyskinesia, and a U of R neurologist mentioned that one of her treatments might be a factor (but didn’t suggest altering her treatment without consulting her doc).

She stopped taking the medication without telling her usual neurologist in advance. (“That was my one mistake,” she notes.) But she noticed a major drop in dyskinesia.

“When I told him I didn’t take [the drug] anymore — and why I didn’t take it anymore —he came unglued,” Bernadette says. “Nobody intimidates this little girl, but I was almost in tears.”

In with the new

Fortunately, Bernadette’s husband, Mark, attends doctor’s appointments with her and calmly stepped in when the doctor flipped out.

“Mark said, ‘You’re not going back there,’ and I said, ‘No, I gotta find another doctor,” she says.

After about a month, she landed a new neurologist at U of R. Although Rochester is about an hour and 15 minutes away, the change has been well worth it and the transition was “seamless” in terms of paperwork and insurance, Bernadette says. (Other patients aren’t always so fortunate, when it comes to insurance coverage — see one example here.)

Her new physician is a younger doctor who’s a movement disorder specialist (focused on PD), rather than a general neurologist (treating a wide range of neurological disorders).

“I was leery” at first, Bernadette says. “She wasn’t that old. She wasn’t out of school that long. My husband said, ‘No—take her! She’s young! She’s got fresh ideas!’ I never looked at it that way.”

These days, Bernadette’s doctor visits are pleasant from start to finish, she says, because the entire office staff is friendly and she has more of a dialogue with her doctor. She isn’t afraid to ask questions or discuss her symptoms and side effects.

“She knows what questions to ask someone with Parkinson’s,” Bernadette says of her new doc. “I tell everyone [with PD] that they need to go to a motion specialist.”

Bernadette continues to stay on top of PD research by reading books and articles (which she advises all patients to do), and no longer feels intimidated about raising new ideas, whether in-person or over the online patient portal (something her old doctor didn’t offer).

“I tell people, you have to do it yourself — you have to be an advocate for yourself,” Bernadette says.

Not every doctor and patient will click, she says, especially with such a varied disease as PD (sometimes called a “snowflake disease” because it can affect people so differently).

“You gotta go with your gut. I might like German shepherds and you might like chihuahuas — and there’s nothing wrong with that,” she says. “It’s a personal thing.”

Bernadette — an upbeat jokester — likes how her new doctor can roll with her sense of humor, but also knows when to take her seriously.

“I can be me,” she says.

How’s your relationship with your doctor? Have you ever noticed “red flags” in your care or had to change doctors? Join PatientsLikeMe today to jump into this conversation in the forum. Also, check out our Good Care Checklist, which PatientsLikeMe developed based on recent research with the Robert Wood Johnson Foundation on “good health care” from the patient perspective.

Share this post on Twitter and help spread the word.


Is there a medical gender gap? The not-so-brief history of sexism in medicine

Posted March 27th, 2018 by

As Women’s History Month comes to a close, take a look at the gender gap in health care and how the centuries-old notion of “hysteria” may still taint women’s experiences today.

History of “hysteria”

Turns out, there’s nearly 4,000 years worth of evidence that people believed women’s illnesses stemmed from the uterus or sexual issues.

  • An Egyptian papyrus dating from about 1900 B.C.E. includes recipes for medicines to coax a ‘wandering uterus’ back to its proper place in the body.
  • The ancient Greek philosopher Plato described the uterus as an animal, which roamed inside women’s bodies, causing symptoms as it moved.
  • In the Middle Ages, many believed in humoural medicine, which linked so-called “hysterical symptoms” to the retention of “sexual fluid” in women.
  • During the late 1800s, belief and scientific interest in hysteria reached a fever pitch. French neurologist Jean-Martin Charcot proposed that hysteria was a nerve disease similar to multiple sclerosis and not unique to women. Sigmund Freud argued that hysteria was rooted in “unconscious conflicts” or embarrassment, which converted into bodily symptoms. He called this “conversion hysteria.”

In the early 1900s, hysteria got lumped under the broad category of “neurosis” and the term gradually fell out of medical use but the concept still lingered in broader culture, according to the British Science Museum.

Present day sexism

Writer Maya Dusenbery, who has rheumatoid arthritis, makes the case that sexism still haunts modern medicine in a new book called Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

Here are some key stats and dates she cites:

  • Three-quarters of the estimated 50 million Americans with autoimmune diseases are women; patients with autoimmune diseases see an average of four doctors over four years before they receive the correct diagnosis, and nearly half report being labeled “chronic complainers” during their search (see our recent report on the diagnosis “lag time” for PatientsLikeMe members with various conditions)
  • Researchers understand far less about women’s biology because of a scientific gender gap. Up until 1993, the National Institutes of Health wasn’t required to track how many women were included in the research it funded with federal taxpayer dollars. Women (particularly those of childbearing age) were often excluded from clinical trials because of “a paternalistic concern about the risks to them and their future offspring” and because “researchers found it easier to study only men” — and even research on animals used (cheaper) male mice.
  • In addition to the research gap, there’s also still a “trust gap” in medicine, Dusenbery says. “While the term ‘hysteria’ has fallen by the wayside, the concept has remained alive and well,” she says, noting that other terms that have taken its place include: Briquet’s syndrome, somatization, conversion disorder, psychosomatic, psychogenic, and functional symptoms. About 70 percent of those with “medically unexplained symptoms” (today’s popular phrase that often implies “somatized emotional distress”) are women.

Some patients are raising their voices about these gaps. Documentary filmmaker Jennifer Brea, who has chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME), addresses the trust gap in her recent film Unrest and her TED Talk, “What happens when you have a disease doctors can’t diagnose.” And some conditions that are far more common among female patients, such as lupus, are finally getting more attention from researchers.

But Dusenbery wonders how many countless women have fallen through the cracks of these gaps in the system. “The harm done by medicine’s gender bias is difficult to quantify but staggering to consider.”

Have you experienced gender bias in your medical treatment? Join PatientsLikeMe today to connect with 392,150 women living with health conditions.

Share this post on Twitter and help spread the word.