different disease modifier. “Nothing seemed to be
making any difference,” Whitney recalled.
He sought a second opinion from another neurologist, who made the diagnosis of primary-progressive MS (PPMS) and suggested Whitney continue
using his disease-modifying drug. He did so for
another 12 months. A visit to a third neurologist
in summer 2008 didn’t yield any better news. “He
explained that PPMS seemed to be a different
disease than RRMS (relapsing-remitting MS), and
there was nothing they had to treat it.”
For the 10–15% of people with MS who have
PPMS, Whitney’s story is a familiar one. They
feel frustrated—sometimes even hopeless—about
the lack of understanding of their disease course,
let alone the lack of treatments designed for
their diagnosis. Those who develop secondary-progressive MS (SPMS) after having RRMS often
have similar feelings. And this is a far larger group.
Richard Rudick, MD, director of the Mellen Center for Multiple Sclerosis Treatment and Research
at Cleveland Clinic Lerner College of Medicine,
empathizes with the frustrations, acknowledging
that treatments are available for RRMS but not for
the progressive forms of MS.
“We can offer relapsing-remitting patients proactive action,” Dr. Rudick said at a think tank on
progression held by the Society last December.
“On the other hand, we have a horrible unmet
need in the group for whom we cannot say that. I
tell people with progressive MS that we’re going to
stop it, we just don’t know when. It’s a matter of
To that end, the Society is ramping up the research
focus on progressive MS to turn promise into
action for everyone living with progressive MS.
© JEN SHELTON
(To view a video of the “think tank” meeting, visit
the National MS Society’s channel on You Tube at
Progressive MS occurs in two forms: primary and
secondary. PPMS is characterized by slow but
continually worsening symptoms from the onset
of the disease with occasional plateaus and temporary improvements—and without distinct relapses
or exacerbations. The average age to be diagnosed
with PPMS is 40, explained Tanuja Chitnis, MD,
with the Partners Multiple Sclerosis Center at
Brigham and Women’s Hospital in Boston.
The symptoms could include weakness, numbness,
spasticity in the lower limbs, decreased coordination, bladder dysfunction and mobility problems,
Dr. Chitnis said. Those living with RRMS “may
have residual disability, but it is related to the
relapse itself.” If someone feels the sudden onset of
a weak arm over a couple of days, doctors would
likely deem that a relapse. However, if that arm
weakness slowly increases over several months, it’s
likely to be considered progression.
Few objective measures
Currently, doctors have few objective tools to measure progression. The most common is the EDSS