Living Well with MS
It all started with a hike. Elissa J. "EJ" Levy was enjoying a rustic California hike in the summer of 2001 when she noticed that she was stumbling more than usual. Presuming that she was just having an "off" day, EJ did not pay much attention to the strange tumbles and trips. Not long after, at a yoga class, she found herself falling out of positions. Eager to find the cause of her imbalance, she sought the expertise of an orthopedist. Only minutes into the examination, the doctor told EJ that she should see a neurologist. A few months later, after moving back to her native New York City, she took the orthopedist's advice and made an appointment with a neurologist. It did not take long for him to suspect that EJ had multiple sclerosis (MS).
An MS specialist reviewed EJ's case and diagnosed her with secondary progressive MS, a steadily progressive form of the disease. Over the course of two years, EJ went from hiking and skiing to needing a wheelchair to travel any long distance. Such drastic changes were difficult for EJ to adapt to and she was scared.
A Commitment to Finding the Best Care Available: The Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai
When EJ was first diagnosed in 2002, she was committed to finding the best care available and found her way to the Corrine Goldsmith Dickinson Center for MS at Mount Sinai. EJ was excited to receive treatment at this highly regarded and in-demand facility. Fred Lublin, MD,
the MS Center's Director, started EJ on one of the self-administered injection therapies. For the next four to five years, EJ tried many of the available medications, but her condition continued to progress.
Access to Cutting-Edge Clinical Trials: EJ's "Rockette Moment"
EJ was then invited to participate in a clinical trial for a new oral medication for MS. She began the medication, and, after the first week, she had a follow-up appointment at the MS Center. The doctor asked her to raise her leg. Normally, her efforts would yield a one or two inch lift, but, this time, her leg went straight into the air "like a Radio City Music Hall Rockette." EJ proceeded to jump off the table, and, although a little shaky, she was able to walk around the room and into the hallway. "That was one of the happiest moments of my life," says EJ with pride.
"I realized soon after being diagnosed with this chronic disease that having the right group of people surrounding me was going to make all the difference in making sure I had the highest quality of life possible." That was realized for EJ when she became a mom to Matilda in May 2013. Says EJ, "For a long time I couldn't even take care of myself, but, with all the amazing research that has produced new treatments and the perseverance of not only myself but my entire team at the CGD Center, I am now a single mom taking care of the most precious gift I could have ever hoped for."
MS is one of the most mystifying and puzzling neurological diseases. It affects millions of individuals and their families who must anticipate the day-to-day changes and struggles that MS patients face. Mount Sinai, with its highly specialized staff, is dedicated to helping each patient navigate the disease's challenges while vigorously searching for a cure. EJ's doctors continued to try every appropriate new treatment as it became available, and she is now able to walk, talk, and travel across the country to accelerate the discovery of a cure for MS. For EJ, her road to wellness started with an appointment with a Mount Sinai neurologist. Perhaps someone you know can have a similar story.