MS is striking Vermont particularly hard
MIDDLEBURY — The causes of multiple sclerosis (MS) remain somewhat of a mystery, but research is producing new treatments and medications that are allowing patients to maintain better quality of life.
“Everyone has their own version of it,” said Dr. Andrew Solomon, a UVM Medical Center neurologist and director of institution’s Multiple Sclerosis Center. “It’s a combination of genetics and environmental triggers. There have been hundreds of genes that have been associated with MS.”
Multiple sclerosis is a chronic, often disabling disease that attacks the central nervous system, including the brain and spinal cord. Symptoms may be mild — such as numbness in the limbs — or severe, such as paralysis or loss of vision, according to information provided by the National MS Society.
MS affects the body’s immune system and attacks myelin, the fatty substance that surrounds and protects the nerve fibers of the central nervous system. The damaged myelin forms scar tissue (sclerosis). Often the nerve fiber is also damaged. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted.
Symptoms of MS may include tingling, numbness, painful sensations, slurred speech, and blurred or double vision. Some people experience muscle weakness, poor balance, poor coordination, muscle tightness or spasticity, tremors, or paralysis, which may be temporary or permanent. Problems with bladder, bowel, sexual function or mood (particularly depression and anxiety) are also common, according to MS Society information.
All MS patients get their own versions of the disease, according to Solomon.
“We’re not quite there yet with personalized medicine to know which medicine works best for who,” Solomon said.
Multiple sclerosis patients deal not only with the symptoms of the disease, but also the psychological impact of not knowing how acute their condition will become. Patients can have a milder, remission-relapse form of MS, while others can experience a more chronic and debilitating variety that can severely impair their mobility.
“The hardest part of MS patients and their specialists is the unpredictability of it,” Solomon said. “It’s very hard for us sometimes to predict how things will unfold for people in five or 10 years.”
And that’s frustrating for patients seeking some predictability about how they’ll be able to live their personal and professional lives.
“It is really challenging,” Solomon said.
Solomon said MS strikes one in every 400 Vermonters, with patients typically diagnosed between the ages of 20 and 50. Vermonters are diagnosed with the disease at a rate that is more than twice the national average of about one in 1,000, according to Solomon.
“The numbers are higher the further you get away from the equator,” Solomon said.
This evidence suggests that colder temperatures could be a contributing factor in who gets MS, but medical officials are still not certain about how external factors and/or genetics play a role in who gets the disease. Scientists continue to explore whether the absence of Vitamin D — derived primarily from sunlight — in colder climates could play a role in MS, Solomon said.
Locally, an estimated 57 people in Addison County were reported to have the disease as of this past May, according to Shanna McCabe, community program manger for the Vermont chapter of the National MS Society. But McCabe stressed there is currently no federal requirement for health care institutions to track numbers of patients with neurological diseases. That means the current MS patient estimates are probably conservative, she said.
There are 14 medications now being used to help MS patients, according to Solomon. Some of those drugs only recently received Federal Drug Administration approval. One of the more promising new drugs, Solomon said, is ocrelizumab, which in trials — including some held at UVM’s Multiple Sclerosis Center — has shown to be particularly effective in delaying the progression of disabilities related to MS. And Solomon said patients would only need a few infusions of ocrelizumab per year.
“That could be pretty convenient for people,” Solomon said.
Unfortunately, there are no drugs or therapies at this point that can repair the brain lesions in MS patients.
“The hope is we will eventually have something that will (repair lesions)” Solomon said. “Until then, all we can do is prevent further damage.”
Fortunately, patients are being diagnosed more quickly and effectively these days due to MRI technology, Solomon noted. That means patients can be put on therapy regimens sooner and therefore better contain the advance of the disease.
UVM’s Multiple Sclerosis Center will continue to serve MS patients and conduct research to battle the disease. The center recently hired a new specialist, Dr. Aurelia Smith, formerly with the Mayo Clinic. Solomon said the center currently sees 1,000 to 1,500 patients from throughout Vermont, New Hampshire and upstate New York.
The National MS Society will continue to help raise money for the research being conducted at MS centers throughout the country. The Williston-based branch of the National MS Society organizes a variety of events — including walks, conferences, talks and luncheons — designed to shed more light on the disease and generate funding to find a cure.
The MS Society also does outreach and advocacy, which is McCabe’s specialty. In her dealings with patients, McCabe has found that those living with MS derive great benefit from networking with others facing the same battle.
“In general, when people receive (an MS) diagnosis, it is important that they have support,” McCabe said.
And if they don’t have a local MS support group or family of friends nearby, they can reach out to the National MS Society at mssociety.org and also msconnection.org. In Vermont, the MS society can be reached at (802) 871-5231.
To read about one local man’s struggle with MS, read related story “‘Brutal disease’ changes a family.” Reporter John Flowers is at [email protected].