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A Rare Disease Treatment Pilgrimage

What went wrong at the Mayo Clinic

When people tell their relatives, friends, or perhaps co-workers, that they have a very freakish rare disease that no local practitioners can seem to figure out, the response is often: “Why don’t you go to the Mayo Clinic?”

And that’s to be expected. After all, the Mayo Clinic consistently ranks near the top of US News & World Report’s annual Best Hospital’s list, with its own dedicated freakish rare disease clinic.

In that spirit, about a year ago, Emlyn Altman, an Ivy-educated architectural lighting designer with a heavy science/math and fine arts undergraduate background, packed up her car and drove over three wintry hours from the small town in Iowa where she had recently settled to this top hospital's Rochester, Minnesota, facility, in hopes of spending the next several days getting some answers about her thirty-year struggle with our freakish rare disease from Mayo Clinic neurologists.

Ms. Altman, who has established the misophonia website Sense Haven as a misophonia blog/resource, and is currently working on a misophonia memoir, says that when she first discussed misophonia/selective sound sensitivity syndrome with the folks at Mayo, they seemed confused. However, she says she decided to put up with the six month’s wait and pages of paperwork required to get a doctor's appointment at Mayo because even her sister, the chief of pediatrics at a major medical teaching hospital, could hardly find mention of misophonia research in the freakish rare disease database she had consulted (plus, it was near the end of the year, and Ms. Altman’s health insurance deductable had basically been met).

Ms. Altman says she arrived at Mayo carrying a comprehensive evaluation from the misophonia audiologist who had made her summer 2012 diagnosis of the rare disorder, extensive notes about her numerous aural, visual and tactile triggers and a bundle of hopefulness. “I met with a very nice neurologist who took note of my family and personal history and my symptoms, but my heart sank when I noticed him Googling misophonia on his computer,” says Ms. Altman. She says the Mayo neurologist then performed a basic manual-motor skills assessment, and when she asked him if there would be any further testing, such as brain scans, he said they weren’t necessary.

The Mayo neurologist did ask Ms. Altman one further question towards the end of the two-hour exam: Did she have the same misophonia rage response to certain misophonia trigger sounds when she created them as when others made them? Not realizing until the drive home that she had subconsciously altered her life to avoid making trigger sensations, Ms. Altman told the Mayo neurologist that she only reacted when others made the triggers. At that point, he concluded that her misophonia was not really a neurological issue, but a “conditional" one and suggested Ms. Altman consult with Mayo’s psychology/cognitive behavioral therapy team. She says she declined primarily because of time and insurance constraints.

A few months later, Ms. Altman received the final report on her consultation at Mayo. She says that what jumped out at her was that her father's sudden death and her mother's subsequent depression and suicide when Ms. Altman was a young girl were mentioned twice in the narrative. Further, the subsequent referral to the psychology/cognitive behavioral therapy team made her feel like she had "a suicide victim survivor rubber stamp" on her forehead. She says she had always identified more with her father and that being raised in his sister’s loving family after the loss of her parents was actually a very positive experience. In fact, Ms. Altman says, facing her grief with their support might have strengthened her in several ways, as evidenced by her later academic and career successes.

“Unfortunately,” she says, “I’ve encountered too many doctors who have told me that my misophonia is a result of my tragic past,” she says. “All I can say to them is that: 1) my misophonia symptoms started long before my parents’ deaths, and 2) there are thousands, if not millions, of misophonia sufferers in the world who haven’t experienced tragedies like mine. Isn’t it at all possible that my stress and anxiety is caused by my discomfort (annoyance) with triggers, not that my tragic past caused the triggers?”

Ms. Altman’s experience at Mayo encapsulates our basic dilemma: We have a disorder that seems to stand at the convergence of our brains and minds. And since that intersection is tremendously busy scientific territory, many practitioners, even the neurologists at the Mayo Clinic, still aren’t quite sure how to sort out the emotional traffic.

From the research I have read, while the emotions we experience from having misophonia (i.e., anxiety, shame, guilt) may be created by our minds, the rage we feel when we are exposed to sensory triggers seems to be a directive issued from the sensory/emotion-processing region of our brains called the insula. Confusing the matter even further is that some of us, (myself included), also have a brain-mind convergence that causes such better-known neuropsychiatric conditions as obsessive compulsive disorder and depression.

The good news is that through the use of advanced PET and fMRI brain scan technology and the search for psychiatric genetic biomarkers, neuroscientists are just now starting to discover the real origins of some of more common brain-mind disorders, and with them, theories on more effective, individualized treatment options. It is only a question of time before researchers and clinicians get to freakish rare diseases like misophonia, too.

Maybe those medical professionals will be affiliated with the Mayo Clinic.

 

 

 

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