Patient Stories

Rod Fussinger spent his life building dreams for others as a successful real estate broker in Northern Kentucky. A devoted husband to Claire, proud father of four, and grandfather to six, Rod was known for his dedication, positivity, and commitment to staying healthy. But in 2022, everything changed.

• After a routine eye procedure, Rod developed alarming symptoms that left him and his family desperate for answers as his condition rapidly deteriorated.
  
• Following testing and evaluations with other highly regarded institutions, a referral to UC Health in Cincinnati led to the correct and extremely rare diagnosis of anti-IgLON5 disease.
  
• With a tailored treatment plan involving plasma exchange (PLEX) and immunotherapy, Rod made a remarkable recovery, regaining mobility, clarity, and independence, while continuing ongoing treatments that allows him to live a meaningful and hopeful life.

Rod’s remarkable recovery reflects his positive spirit, his family’s support, and the unwavering dedication of the UC Health team, who approach even the most complex medical conditions with compassion and expertise.

If you or a loved one is living with unexplained or complex neurological symptoms, contact the team at the UC Gardner Neuroscience Institute at (866) 941-8264.

A Mysterious Decline

Rod’s unusual symptoms started after an eye procedure. First, a bout of double vision, then unexplained sleep disruptions. “For several months, I’d wake up being very out of breath,” Rod recalls. “It felt like I was suffocating.”

By early 2023, the symptoms snowballed. He suffered from paralyzing headaches, swallowing problems, weakness, imbalance, disorientation, fatigue, and frightening hallucinations. Sometimes, he woke up in the middle of the night, confused about where he was and not recognizing his own home.

Amid all of this, Rod’s son Bill, who lives in Japan, returned home to support the family for two months. But Rod’s condition had deteriorated so profoundly that he has no memory of his son’s visit.

Desperate Search for Answers

As Rod’s condition worsened, the Fussingers found themselves in and out of emergency rooms, urgently searching for answers. Despite numerous visits to specialists at their local hospital, test after test came back inconclusive. Eventually, doctors recommended they seek help from either the Mayo Clinic or the Cleveland Clinic.

Claire managed to secure an appointment at the Cleveland Clinic, where, after several tests, Rod was given a suspected diagnosis of Multiple System Atrophy (MSA)—a rare and progressive neurodegenerative disorder that shares many symptoms with Parkinson’s disease.

Despite the devastating news, there was one silver lining: the Cleveland Clinic referred him to UC Health for ongoing treatment and expertise closer to home. It was there where the true turning point began. 

A Breakthrough at UC Health

At UC Health, Rod and his family met with renowned neurologist Dr. Alberto Espay and his team. After an extensive number of tests, the team weren’t convinced it was MSA. They ordered a lumbar puncture and specifically tested for a rare condition: anti-IgLON5 disease.

“We approach every consultation as an opportunity to conduct a thorough evaluation from scratch. Our goal isn’t to rubber-stamp previous diagnoses, but to independently arrive at the most accurate conclusion. Only then can we determine the best treatment plan,” said Dr. Espay.

On August 30, 2023, Rod’s 74th birthday, they got the answer. It was indeed anti-IgLON5, an aggressive form of autoimmune encephalitis, so rare that few treatments even exist.

Rod was referred to Dr. Joseph LaPorta, a UC Gardner Neuroscience Institute neurologist specializing in rare autoimmune neurologic diseases. Working closely with the Mayo Clinic, Dr. LaPorta developed a customized treatment plan. It began with several types of immunotherapy including steroids, intravenous immunoglobulins (IVIg) and the powerful immunosuppressing medications rituximab and cyclophosphamide which are designed to eliminate harmful antibodies. This was followed by PLEX (plasma exchange), a process that filters the blood to remove those antibodies.

A Remarkable Recovery

His improvements were nothing short of extraordinary.

Rod, who had once been almost completely bedridden and unresponsive, began to speak more, eat again, and sleep through the night. His hallucinations disappeared. He slowly came off nearly all the medications he had been taking to manage his symptoms.

Today, Rod walks with a cane—something doctors once told him might never happen again. He continues to receive PLEX treatments and has regular follow-up care to monitor the disease.

“It truly is an honor to care for patients with rare autoimmune neurologic syndromes like anti-IgLON5. This disease and other forms of autoimmune encephalitis were only discovered in the last decade or two and are changing our understanding of neurology, said Dr. LaPorta.

“When missed, they can result in disabling dementia, psychosis, coma, and more; however, if recognized and treated, we can see miraculous recoveries. After months of seeing Rod in a near-comatose state, I will never forget the first day he turned the corner and I got to meet the ‘real’ Rod Fussinger.”

Never Stop Believing

Rod’s journey with anti-IgLON5 isn’t over, but today his life is filled with gratitude, especially for Claire, his “rock,” and his children, who never stopped fighting alongside him.

He credits his improvement to his incredible medical team at UC Health. “You get fortunate enough, like we did, to find the right hospital with the right people,” Rod says.

But he believes healing takes more than medical treatment. “My daughter told me I’m the most positive person she knows,” he says, “I think there’s something to that. Never stop believing is probably as important as having the best team around you.”

If you or someone you love is living with unexplained or complex neurological symptoms, help is still possible. At the UC Gardner Neuroscience Institute, we specialize in solving the most challenging cases—because every patient deserves answers, care, and hope. Contact us at (866) 941-8264.