When Sharon Dodge’s neurologist told her she had multiple sclerosis in 1996, Dodge was in Europe, where her Navy pilot
husband was stationed. “I think I seriously went into
shock,” she says—and not just from the news that
she had a serious chronic illness. It was the thought of
ending up like her father that sent her into a panic.
Dodge’s father had been a 30-something airline
pilot at the top of his career when he was
diagnosed with MS. At that time, there were no
disease-modifying therapies and no symptom-management treatments for the disease. “He
went downhill fast,” she recalls. “Every time he
had an exacerbation, his body wouldn’t recover.”
Within seven years of his diagnosis, Dodge’s father
was using a wheelchair. At age 48, he died from
complications related to his MS.
Dodge was 30 when she was diagnosed with MS,
eight years after her father’s death. “All I could
think was, ‘Here I am, this young Navy wife with
a 3-year-old.’ It was a lot to swallow at first,” she
says. What she didn’t realize at the time was that
no two cases of MS are the same. Aside from
their genetic predisposition, this father’s and
daughter’s MS would turn out to have little else
in common.
Why everyone with MS is different
If you’ve been diagnosed with MS, you’re probably
already familiar with the four types of the disease:
• Relapsing-remitting MS (RRMS): MS
begins as a relapsing-remitting disease about
ALL ILLUSTRATION BY JAMES STEINBERG
85 percent of the time. RRMS is characterized
by unpredictable periods of worsening (called
relapses, exacerbations or attacks) followed
by remissions. A remission may be complete,
meaning that the person returns to his or her
pre-relapse level of functioning, or partial,
meaning that some of the symptoms are likely to
be permanent.
• Secondary-progressive MS (SPMS): Within
about 10 years, approximately 50 percent of
those who are diagnosed with RRMS transition
to SPMS, which is characterized by a steady (but
not necessarily rapid) progression of disability
without any remissions. Within about 25 years,
a large majority of people make this transition.
People with SPMS generally have fewer or no
relapses as time goes on.
• Primary-progressive MS (PPMS): For about
10 percent of people, MS progresses right
from the beginning, without any relapses or
remissions. PPMS seems to differ from RRMS
and SPMS in terms of its underlying disease
process—it has less inflammatory action going
on in the brain and spinal cord, and more tissue
degeneration and destruction early on. These
differences may be the reason that the current
treatments for MS—which mainly target the
inflammation—work much better in relapsing
forms of MS than they do in PPMS.
• Progressive-relapsing MS (PRMS): A very
small number of people (less than 5 percent) are
diagnosed initially with a progressive form of the
disease but then experience some relapses down
the road.
Even within these types, MS doesn’t always follow
predictable patterns, explains Rosalind Kalb,
PhD, a clinical psychologist and vice president of
the National MS Society’s Professional Resource
Center. MRIs of the brains and spinal cords of
people with MS show that no two patterns of
damage are exactly alike, she adds. “It’s rather
random where the damage occurs, and that means
the symptoms people have will vary, as well.” For
example, one person’s fatigue might be a minor
nuisance, while another’s is severely disabling.
A lesion in the spinal cord might lead to difficulty
in walking for one person or bladder urgency
in another.
