NYC Gazette

In February 2019, Gerald Voelbel, a cognitive neuroscientist at NYU Steinhardt, experienced a sudden onset of a migraine, double vision, along with poor balance and coordination. Used to studying the brain, he unexpectedly found himself in the position of a patient.

After initial medical tests, including blood work and brain imaging, failed to uncover the cause, doctors conducted a lumbar puncture. This test revealed elevated protein levels in Voelbel's cerebrospinal fluid, indicating an autoimmune response and leading to a diagnosis of non-Hodgkin lymphoma. The lymphoma triggered an autoimmune attack on his cerebellum, affecting cells responsible for coordination.

The disease involved a novel antibody, RGS8, which reacted with his cancer cells and led to double vision. Though similar cases of severe cerebellar damage in lymphoma patients exist, Voelbel was notable for presenting primarily with non-progressive double vision and mild imbalance. His case is documented in the journal The Cerebellum.

Voelbel expressed the impact of his experience, stating, "I have been doing clinical and neurorehabilitation research for more than 20 years. I never thought I would be the patient. This experience has brought me a profound sense of empathy and a deeper understanding of the lived experience. It has renewed my energy and commitment to making neurorehabilitation more compassionate and effective."

Janet Rucker, a neuro-ophthalmologist, became involved when initial treatments failed to alleviate Voelbel's symptoms. She sent a sample of his spinal fluid to the Mayo Clinic, where researchers were investigating rare immune responses. This process enabled the diagnosis of paraneoplastic neurologic syndrome (PNS), a rare autoimmune disorder linked to cancer and affecting the nervous system.

Rucker emphasized the significance of a lumbar puncture, noting, "After initial normal blood work and brain imaging, it is important to consider extending the diagnostic work up to include a lumbar puncture, as it can guide the diagnostic work up towards achieving the ultimate diagnosis." She highlighted the importance of collaboration across disciplines in autoimmune neurology for establishing accurate diagnoses and detecting hidden cancers.

Voelbel's lymphoma was declared in remission following treatment with rituximab monoclonal antibody and chemotherapy, managed by his oncologist Andrew Evens at the Rutgers Cancer Institute. Despite stabilized symptoms, such as ocular damage and coordination, Voelbel still experiences chronic double vision, migraines, and pain.

As a professor of cognitive neuroscience, Voelbel shares his experience with students to illustrate the brain's complexities and the challenges associated with the paraneoplastic neurologic syndrome. This personal account is detailed in an article in The Cerebellum, authored by Ruben Jauregui, Andrew Evens, Anastasia Zekeridou, Claude Steriade, Todd Hudson, Gerald Voelbel, Steven Galetta, and Janet Rucker.