Seven years ago, after a week of unbearable migraines, Brett Murphy was lying in a hospital bed seeing the world in blurry black and white. Within a week, he was completely blind. Worse still, doctors had no idea why.
The months that followed were filled with uncertainty and anguish for the then-35-year-old father of two young children. “At that point, I did not know if I would see my children’s faces again. It was a very difficult time,” Brett confides.
After ruling out other conditions including stroke and brain tumour, physicians at The Neuro sent a blood sample to a specialized lab. The test came back positive: Brett had Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD), a rare demyelinating disease affecting the optic nerve, spinal cord and brain.
MOG is found on the surface of the myelin that insulates the nerves of the central nervous system. When the myelin sheaths are damaged, nerve impulses may pass incompletely or not at all. In the past, this condition was often misdiagnosed as Multiple Sclerosis (MS) -- another demyelinating disease. Since 2015, antibody tests have allowed healthcare teams to accurately pinpoint the condition, however very little is still known about the prevalence of this disease in Canada.
Immunity on overdrive
“MOGAD is an autoimmune neurological disease meaning that the body's immune system is reacting abnormally to part of the nervous system. The most common symptoms would be optic neuritis, which involves a loss of vision either in one or often both eyes simultaneously; the vision loss can be quite profound,” explains Alexander Saveriano, MD, a neurologist specializing in MS at The Neuro (Montreal Neurological Institute-Hospital) and one of the principal investigators on a new study for MOGAD at the Clinical Research Unit.
There are no currently approved treatments for the disease. “Steroids are used to treat acute attacks and sometimes they can be used more chronically to prevent relapses. But chronic steroid use has a lot of long-term side effects, especially for those patients who might be taking it for years -- we need to find other treatment options,” continues Dr. Saveriano.
Brett was lucky: after being in the care of Paul Giacomini, MD, who heads The Neuro’s MS clinic, Brett completely regained his vision after treatment with high-dose steroids and plasma exchange therapy. He relapsed once after that first attack but has responded well to treatment.
New use for current treatment
A new study at The Neuro is hoping to test a monoclonal antibody treatment for individuals with MOGAD. “It's rare that we are able to launch studies for these particularly rare neurological diseases. This will be really at the at the cutting edge of the research on this condition, which is exciting. It will be good for science and for the patients,’’ remarks Dr. Saveriano.
The study will look at a medication that is already used to treat neuromyelitis optica spectrum disorder (NMOSD), another autoimmune neurological disease that can produce similar symptoms to MOGAD, to see if it can produce similar management of inflammation with fewer long-term side effects than steroids.
“The treatment is a monoclonal antibody that is directed against the interleukin-6 system -- a chemical that the body's immune system produces that can increase inflammatory responses. The hope is that the treatment will reduce the risk of inflammation and therefore the risk of having attacks,’’ says Dr. Saveriano.
The same standard of care medication is also the subject of ongoing study in the treatment of NMOSD, another rare demyelinating disease. “Left to its own devices, NMOSD has the capacity to cause very severe and permanent neurological deficits, blindness and paraplegia. The attacks are typically very debilitating, and the recovery is often poor, so the best way to treat the condition is really by preventing the attacks altogether,” explains Dr. Saveriano
For Brett, news of research on these rare demyelinating conditions offers hope. “MOGAD is not a well-known or very studied condition. The prospect of having medication that could help others who will go through what I went through is huge. It is so important to have studies like this,’’ he concludes.
For information on clinical research at The Neuro, visit cru.mcgill.ca/ms.
