misdiagnosis

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

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 …

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

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 …

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Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe

Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades.  After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms.  Discover what hindered the process and what’s she learned along the way in our interview with this highly active member, who has contributed more than 12,000 posts to our forum since joining PatientsLikeMe in 2010. 1.  You had a very long journey to discovering your Lyme disease. Where were some of the obstacles? The main obstacle to an appropriate diagnosis of Lyme disease for me was the lack of knowledge in the traditional Western Medical System. Had my general practitioner (GP) known about the testing for Lyme, I might have been diagnosed 10-12 years earlier. Many people go from doctor to doctor and undergo a horrific array of tests and medications before they find out it is Lyme disease. 2.  We have a new Lyme Disease Forum at PatientsLikeMe. What is that important to you? After my diagnosis and two other members of the Fibromyalgia Forum discovering they too had Lyme, I think I was pretty vocal …

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