Life Lessons

Life Lessons: Moyamoya: Journey to a diagnosis

Ever since she was in high school, doctors were telling Chelsey Gabrielson that her medical symptoms, which looked almost like Parkinson’s disease, were nothing more than anxiety and depression. If she had settled for that answer it could’ve cost her her life. But Gabrielson and her mother refused to settle for an easy answer and followed their instincts all the way to a life-saving diagnosis.

“I had a neurologist tell me it was vitamin D, that’s all it was.” Chelsey explained.

Her tremors and dizziness began in high school. By the time she was 25, blackouts and slurred speech also haunted her.

“We saw two internists, an endocrinologist.” Chelsey’s mother Angie Gabrielson said.

“Two enterologists, a rheumatologist.” Chelsey continued.

“A hematologist, two neurologists.” Angie said.

But her symptoms kept getting worse, as did her family’s frustrations.

“They would say we’re going to do tests and then come back in six weeks. We got to the point where I couldn’t wait six weeks anymore.” Chelsey said.

“There’s more of a propensity with male doctors to look at a young female and immediately go to anxiety and depression as the primary cause as opposed to looking a little deeper.” Angie explained.

Seven agonizing years filled with vague and wrong information finally ended at the Mayo Clinic. The diagnosis? Moyamoya. It’s a rare disease that restricts blood flow to the brain.

“Things like high anxiety or emotional disorders can be confused with moyamoya if it’s more in the frontal part of the brain.” Explained Benjamin Brown, MD; a Neurosurgeon at the Mayo Clinic in Jacksonville, Florida.

Surgery helped, her symptoms got better for a short while, but there’s no cure. There is one thing she and her family are sure of.

“I think you have to not be afraid to question the doctors.” Angie said.

The Gabrielson family says trust your instincts when it comes to your health. Don’t give up until you get a real answer.

The word Moyamoya is Japanese for “puff of smoke” which is what it looks like in an angiogram. The cause is unknown but there may be a genetic factor. Chelsey continues to get treatment to restore blood flow in her brain, but studies show only 45 percent of patients make a good recovery. 35 percent relapse within ten years. The Gabrielson family is now undergoing additional testing from doctor Steinberg at the Moyamoya Center at Stanford University.

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