Renie Calkin, now a Vero Beach resident, vividly remembers the day in 2000 that marked a turning point in her life. “I was at work. A tingling came over my whole body and I couldn’t get one foot in front of the other.”
Renie thought she had a pinched nerve and went to the emergency room of a local hospital, where she had an MRI. The news was unexpected and stunning. “I was told I needed further testing, but they thought I had MS.” It turns out that she did.
Multiple sclerosis (MS) is an autoimmune disease that attacks the protective sheaths, called myelin, which coat and protect nerve fibers in the brain and spinal cord. “Myelin is like a lamp cord cover,” says Dr. S. James Shafer, a neurologist who joined Vero Orthopaedics in 1997 as the principal founder of Vero Neurology. The damage to the myelin causes lesions on the brain or spinal cord and disrupts the communication between the brain and the rest of the body.
According to Dr. Shafer, myelin damage is not the only cause of MS. Within the myelin are nerve cells, which have hairlike extensions called axons. Axons are intended to carry messages from one nerve cell to another. “The axon itself may be destroyed, which is like cutting a wire,” says Dr. Shafer.
The signs and symptoms of MS may vary significantly depending on the amount of damage and the location of the affected nerve fibers, but can include the following, as outlined by the Mayo Clinic:
• Numbness or weaknesses in one or more limbs; typically on one side of the body at a time.
• Tingling or pain in parts of the body.
• Tremor, lack of coordination, unsteady gait.
• Slurred speech.
• Fatigue and dizziness.
• Bowel and bladder issues.
There are two types of MS:
Relapsing-remitting, in which new symptoms develop over a period of time and then improve partially or completely; remission periods can last months or years. This is the most common type.
Primary-progressive, in which there is a gradual onset and steady progression of sign and symptoms, with no relapse.
Although Renie’s MS is classified as relapsing-remitting, she says her situation is somewhat unusual. “Most people’s symptoms go away for a while. Mine came and never went away.” At the time of her diagnosis, Renie, a PGA Class A Professional, was running a golf course in Chicago; working 60-plus hours each week. In addition to her full slate of management responsibilities, she spent a lot of time playing golf, giving private lessons, and holding clinics. With her husband, she was also busy raising two teenage children.
Renie’s primary symptoms were and are constant numbness and tingling in her fingers and from the waist down. “I also have tightness around my waist,” she says. “It’s called the MS hug.” Renie’s gait is affected as well.
Dr. Shafer says that many MS patients go undiagnosed for a few years, as early symptoms can be vague and attributable to other conditions. Looking back, Renie thinks she experienced numbness and tingling well before that day in 2000, but at the time she attributed those symptoms to past sports injuries. MS is diagnosed through reviewing the patient’s medical history and symptoms, an MRI, and testing of spinal fluid.
“MS is not a genetic disorder and it’s not known what triggers the attacks by the immune system,” Dr. Shafer says. However, there is a known connection between geography and MS; Dr. Shafer says that the incidence is higher for people who lived above the Mason-Dixon Line for their first 17 years of their life, and incidences are far lower south of the Equator. This leads to the theory that colder weather may be a risk factor.
Women are twice as likely as men to develop MS, and it most commonly affects people between the ages of 15 and 60. Renie was 43 at the time of her diagnosis. “It is the #1 potentially disabling condition for women under the age of 40,” according to Dr. Shafer.
There are 10 different medications available to Dr. Shafer in his practice; perhaps the best known are beta interferons, which are self-administered by the patient through weekly injections. There are also a few newer medications that are taken orally. “All have their place, depending on the patients’ disease activity and symptoms,” he says.
While not a cure, medications have been shown to reduce both the relapse rate and the formation of new lesions for relapsing-remitting MS. Dr. Shafer emphasizes that early treatment is key to stave off disability.
Dr. Shafer encourages his patients to eat a healthy diet (including foods high in Omega-3 fatty acids), to watch their calorie intake, to exercise and to take a good multivitamin. He also recommends a Vitamin D supplement, as those with MS may be prone to deficiencies.
Renie continued to work at the golf course full-time for five years before retiring to Florida with her husband. She maintains an active lifestyle, and has learned to pace herself. “I make choices about what I do physically. If I am going to the supermarket, I rest before and I rest after.” Her emotional health is strong – she keeps everything on an even keel and doesn’t regret the things she can no longer do. “I stopped playing golf the day I was diagnosed,” she says. “But that never bothered me, because my kids were competitive golfers and I became their cheerleader. Also, golf had become all tied up in my work, and it was no longer that enjoyable.”
Prior to the advent of the current therapies, Dr. Shafer says that about 80 percent of patients were in wheelchairs or using walkers within 15 years of diagnosis. “Now, about 80 percent of patients are still able to walk unaided after 25 years.”
That’s very good news indeed for those being treated for MS.
