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In 2008 Tanya Gilman, then 33, began experiencing numbness and tingling in her hands, feet and legs. She was referred to neurologist Henry Echiverri, M.D., medical director of the Edward-Elmhurst MS Clinic, who ordered an MRI, blood work and a spinal tap. The tests confirmed Tanya had relapsing-remitting multiple sclerosis (MS).
In MS, a person’s antibodies attack the lining of the nerves in the brain and spinal cord. This causes scarring, which interferes with the brain's ability to direct various functions of the body. The nature of symptoms depends on where these scars or lesions develop. Some people have such mild symptoms that they don't need treatment. But others may experience difficulty with vision, balance, dizziness, muscle weakness, numbness and tingling, or even memory.
Tanya was not surprised to develop balance and memory problems and weakness in her hands and legs. But she was perplexed when her emotions sometimes became scrambled.
"When my daughter was hit hard by a ball during one of her games, I started laughing until my side hurt," says Tanya.
She was surprised to learn that her MS caused these upside-down reactions, which she now controls with a mood stabilizing drug.
Dr. Echiverri and Tanya began a campaign to keep the disease process in check, and to reduce both the frequency and severity of flare-ups (attacks that cause new or worsening symptoms). According to Dr. Echiverri, early and aggressive intervention provides the best chance of avoiding disability.
But treatment is a challenge given the unique characteristics of each MS case, how much the effects of medication vary from person to person and the potential toxic effects of some treatments if used long term.
Tanya's initial regimen involved a year and a half on Copaxone®, a conventional medication that proved ineffective for Tanya.
"You have to try a medication for at least a year because it takes at least six to ten months to even kick in,” says Dr. Echiverri. “Then, if the first tier of medications doesn't do it, it's time to bring out the big guns."
In Tanya's case, the first "big gun" involved two-and-a-half years on Cytoxan, a chemotherapy drug that called for monthly two-hour infusions. This helped, but could only be used for a limited time.
"The goal of treatment is for the patient to achieve NEDA or No Evidence of Disease Activity,” he says. “We say there is NEDA if the patient has had no more than one flare-up of symptoms in two years, and the MRIs show no progression. Tanya has achieved NEDA on Tysabri."
But this treatment is also time-limited because of an elevated risk of a brain infection. She and Dr. Echiverri will soon discuss what her next step should be.
"The timing of treatment options that have come out recently is good for Tanya, and others are on the horizon."
The long-term relationship that MS patients have with their care providers is also important.
Tanya says, "Dr. Echiverri is the best doctor and he's been super supportive and patient with me."
Dr. Echiverri says a specialized MS clinic, such as the Edward-Elmhurst Clinic in Warrenville, can make things easier for suburban patients. In addition to Dr. Echiverri, there is a physician assistant on staff, as well as a nurse with special training in MS care. Many tests and services can be performed at the Clinic, which also is linked to a network of neurologists, social workers, and physical, speech and occupational therapists.
As a wife and mother of two teenage daughters, Tanya tries to manage the family's and her own expectations.
"You learn to do whatever you can when you can. You have the energy today? Then do it."
Learn more about our expert diagnosis and treatment for MS.
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