you’re diagnosed, start by getting informed. Get
as much knowledge as you can to assimilate.”
Learn what symptoms you might experience, what
treatment options you have and what a relapse
feels like, she advises. But be sure to give yourself
the time you need to process the diagnosis and the
emotions that come with it.
When you are ready, talk to doctors and nurses.
Ask a lot of questions about your disease. And read
about MS in books, in medical journals and on
reliable websites.
“The people who manage MS most comfortably
are those who learn about the disease and the
kinds of changes it might cause,” Dr. Kalb says.
“Then if something new or unusual happens, they
feel like they’ve got some baseline awareness that
this is probably related to their MS, and they can
talk about it with their doctor. They are a little
more prepared and less panicked.”
Jinjer LeVan, who was diagnosed in 1991 at
age 31, did exactly that, heading straight to a
medical library. “I did a lot of research about MS
and neurodegenerative disease. I wanted to learn
everything I could,” she says.
Becoming more knowledgeable about MS will
also help you communicate more effectively
with your healthcare team. “As a person living
with a chronic disease, it’s up to me to manage
my healthcare if I want to stay as healthy and
active as I can,” LeVan says. “Since I have other
health issues, my healthcare team includes
eight specialists besides primary care and my
neurologist. If there’s something not going right,
then I get to the doctor I need and keep the
others informed.”
Putting together a healthcare team
Because your neurologist is central to your
treatment, it’s imperative to choose one carefully.
“It kind of takes a village,” Dr. Giesser says.
“But the neurologist and the patient are the
nucleus of the team.” Partner with a doctor
who sees enough MS patients to understand the
disease inside and out. Your neurologist should
have an accessible office and a bedside manner
that puts you at ease when you discuss your
treatment options.
In addition to your neurologist and one or more
neurology nurses, and depending on your MS,
your treatment team may include a:
• Primary care physician to oversee general
healthcare needs.
• Physical therapist to improve your strength,
balance and mobility, and to teach you strategies
to relieve fatigue.
• Occupational therapist to improve upper-body strength and range of motion, and to
recommend accessibility tools (such as button
and zipper hooks) to simplify everyday tasks.
