Neuromyelitis Optica Treatment & Research Program

Experts at the Neuromyelitis Optica Treatment and Research Program, part of NYU Langone’s Multiple Sclerosis Comprehensive Care Center, provide treatment, counseling, and education for people with this condition and their families.

Neuromyelitis optica, also known as neuromyelitis optica spectrum disorder (NMOSD), is an autoimmune disorder that causes damage to otherwise healthy tissue in the optic nerve, spinal cord, and in some patients, the brain. NMOSD is a rare disorder, affecting approximately 16,000 people in the United States.

Because the conditions have similar symptoms, NMOSD is often mistaken for multiple sclerosis (MS), a more common central nervous system autoimmune disorder. Standard MS treatments can worsen NMOSD, so accurate diagnosis is very important. If proper treatment for NMOSD is started soon after symptoms start, prolonged remission that stops the disease from progressing is possible.

The Neuromyelitis Optica Program is led by Dr. Ilya Kister, who has extensive experience treating patients with NMOSD and is a leader in research into the condition.

Diagnosing Neuromyelitis Optica Spectrum Disorder

Diagnosing NMOSD starts with a detailed history of the person’s symptoms. During an NMOSD attack, or relapse, people with the condition might experience eye pain, vision loss, numbness, weakness, or paralysis in the arms and legs, and loss of bladder and bowel control.

A neurologic examination is performed to determine if relapses have occurred. If NMOSD is suspected, your doctor orders a blood test for the antibody associated with the condition. An MRI scan of the brain, optic nerve, and spinal cord might also be performed to look for the hallmark lesions of the disease.

Treatment for Neuromyelitis Optica Spectrum Disorder

Care for people with NMOSD is provided by our dedicated team, which includes neurologists, neuro-ophthalmologists, a neuro-urologist, nurse coordinators, social workers, occupational therapists, and psychologists.

The key to preventing disability in NMOSD is in preventing relapses, which is best achieved through new biologic therapies, also known as immunotherapies. These include rituximab (Rituxan®), tocilizumab (Actemra®), and eculizumab (Soliris®). We also use traditional oral immunosupressant drugs such as azathioprine (Imuran®), mycophenolate mofetil (Cellcept®), or a combination of therapies.

During relapse, we prescribe intravenous steroids to help speed recovery. This is often combined with plasmapheresis, which is a way to remove disease-triggering antibodies from the blood.

Patients with NMOSD may experience symptoms due to damage to the nervous tissue. A variety of medications as well as non-medication approaches, such as acupuncture and physical therapy, are available to alleviate common symptoms of NMOSD.

Treatment is provided at the infusion centers at NYU Langone Orthopedic Center and NYU Langone’s Ambulatory Care Center. For relapses requiring inpatient care, experts at NYU Langone’s Tisch Hospital treat people with NMOSD. If you are in need of rehabilitation therapy after a relapse, services are available at NYU Langone’s Rusk Rehabilitation.

Clinical Research in Neuromyelitis Optica Spectrum Disorder

Physicians at NYU Langone are among the leaders in research into better treatments for this rare disorder, and have published widely on the subject of NMOSD. Our patients can contribute to research into NMOSD through clinical trials. We are currently participating in PREVENT, a research study into a promising new treatment for NMOSD called eculizumab (Soliris®). We also participate in the CIRCLES Biorepository, a national effort to store and catalog medical samples from people with the condition and make them available to qualified researchers worldwide.

To learn more about our research program, please email zoe.rimler@nyumc.org or allyson.reid@nyumc.org.

Neuromyelitis Optica Patient Day

The second regional Neuromyelitis Optica Patient Day is planned for Sunday, November 12, 2017. Join us to learn more about NMOSD, current research, and to meet other people with the condition. Breakfast and lunch will be provided.

The event will take place from 9:00AM to 3:00PM at 550 First Avenue in the Farkas Auditorium and Alumni Hall B. Each person with NMOSD may bring two guests. Register online or call Allyson Reid at 646-501-7534 or Zoe Rimler at 646-501-7518.