From Neurologist to Patient: Ilene Sue Ruhoy’s Journey

Before becoming a patient herself, Ilene Sue Ruhoy was a well-known neurologist in Seattle, skilled in treating various diseases.

After spending a decade in her practice, she began experiencing symptoms like fatigue, dizziness, nausea, migraines, and irritability in 2014. Numerous doctors dismissed her complaints as stress or minor issues, not really taking her seriously. There was a sense, she felt, that they just weren’t listening.

It wasn’t until August 2015, after a year of advocating for an MRI, that one doctor finally agreed. The results were shocking and would change her life.

At the emergency room, she learned that she had a meningioma, a tumor the size of an apple pressing on the left side of her brain, causing both hemispheres to shift to the right. Although not classified as cancer, meningiomas pose serious risks, with a mortality rate ranging from 63 to 90 percent if complications occur.

She underwent multiple surgeries to cut off the blood supply to the tumor to stop its growth and later had the entire mass removed.

Reflecting on her experience, Ruhoy remarked, “Looking back, I realize I was begging people to validate my concerns.” She believes that if someone had acknowledged her earlier, she might have avoided the multiple recurrences, as she’s now navigated three rounds of radiation to her brain.

Before her health crisis, she was healthy, much like many of her current patients. It’s perplexing to her, given her dedication to wellness. During her search for answers, she dealt with light sensitivity and severe migraines, which doctors often attributed to her stressful role. One physician barely made eye contact and was absorbed in their computer, while another dismissed her plea for an MRI, fearing it would “feed into hysteria.”

In hindsight, she wondered if she truly grasped what was happening as it was unfolding. It was only after enduring nine months of deteriorating health that she finally found a primary care doctor. Overwhelmed, she broke down in her new doctor’s office, feeling at her limit.

She recalls asking for an MRI, and the doctor simply said, “When a neurologist requests a brain MRI, you order a brain MRI.” That moment was significant for her; she felt a wave of relief, almost wanting to hug the doctor out of sheer gratitude.

Even now, Ruhoy is uncertain about the exact cause of her tumor. With a PhD in environmental toxicology, she’s contemplated potential exposures throughout her life, conducting her own investigations but finding no clear answers. “We don’t really know what causes these tumors,” she said.

Motivated by her experiences, Ruhoy focused on specializing in complex post-exposure illnesses, like long Covid and chronic fatigue syndrome. Many individuals suffering from such conditions feel dismissed, their concerns often attributed to stress or overlooked entirely by busy doctors.

She made a pledge to support her patients, ensuring they don’t leave her office without a plan for recovery. Post-exposure illnesses span various diagnoses and often stem from different exposures, not just infections. Ruhoy mentioned long-term exposure to pesticides or mold as links to diseases like Parkinson’s and multiple sclerosis.

Her practice began with a patient named Danielle, a dancer in her early 30s who suffered from joint pain, allergies, and dizziness. Like many, she had already seen multiple healthcare providers. Ruhoy asked a series of in-depth questions that other doctors had overlooked, eventually uncovering Danielle’s hypothyroidism through a detailed blood test that others had missed.

That diagnosis was likely behind many of Danielle’s symptoms, including fatigue and skin changes. Dr. Ruhoy tackled each issue: an MRI revealed a previously misdiagnosed spinal issue, medications helped manage dizziness, and specialists addressed heart and joint pain. Within months, Danielle began to feel significantly better.

Ruhoy also emphasizes drug-free methods to alleviate symptoms, such as staying active, spending time outdoors, and maintaining regular sleep patterns.

“Will you ever be ‘normal’ again?” is a common question from her patients. Unfortunately, she notes that returning completely to one’s previous state isn’t guaranteed. However, she assures them, “If you take care of yourself and remain attentive to your body’s signals, there’s a great chance of wellness—perhaps even very well-being.”