slammed her. As a lab technician at the Marshfield Clinic, she had enough medical background
to suspect a cerebral aneurysm. The diagnosis of
MS was almost a relief. Still, she had a number of
relapses that first year, her balance deteriorated and
her vision didn’t improve. She started taking daily
injections 11 years ago.
“It’s mainly a nuisance today,” she said. “It’s much
easier now the drug is delivered in a pre-filled
syringe. I just grab one and go.” In the intervening
years, her vision did improve, her kids have grown
up, she wrote two how-to books on quilting,
served as a 4-H club leader, and continued working part time at the clinic. When her husband lost
his job in 2009, the Steinmetzes took the plunge
and bought a restaurant/bar in Marshfield. Lynette
then upped her hours at the clinic to qualify for
health insurance—as her coverage was lost with
her husband’s job. She also took on being a weekend hostess, handling decorations, doing the restaurant’s Web site and looking after the books. She
belongs to an MS support group in town as well.
“I’m stable,” she reported. “Yes, I’d like to get done
with the needles, but I’m not sure I’ll go there.
This is my safety net.”
The bottom line: Are you doing well?
A lot of people with MS will say it’s hard to tell.
The disease-modifying drugs may have little
impact on how a person feels day to day. The
treatment can be doing a good job modifying
the ongoing course of MS, without changing the
bouts of fatigue, spasticity, bladder problems, pain,
constipation, low libido and more. Can a person
who feels crummy really be doing well?
“Professionals;grapple;with;the;same;question,”
Dr.;Rolak;said;recently.;“I’ve;been;to;a;number;of
national meetings where we MS professionals tried
to set guidelines or indicators that a patient is or is
not doing well. Is it the number of MS lesions seen
on;MRI?;Is;it;the;number;of;recent;attacks?;Is;it;a
drop;in;mobility;(reflected;in;scores;on;the;EDSS
scale)? We haven’t been able to agree.”
Dr.;Ransohoff;looks;at;it;this;way:;“How;do;you
know if you’re doing well financially? If you take
every penny you earn and spend on stuff that’s
fun, you might say I’m doing great, I have a car, I
go to clubs, I have a big house. But you’re in debt
… and the debt keeps getting bigger. A person
with;MS;might;feel;reasonably;well,;but;their;MRI
shows they’re developing T2 lesions. That can
translate into a higher risk of secondary progression later on and I believe it requires some attention now. A person’s quality of life has to be good,
but a professional appraisal of the evidence of
disease;control;is;also;needed.;MRIs;may;not;say
much about today—but they are predictive of the
future.”
Dr.;Rolak;isn’t;quite;so;sure.;“MRI;findings;can;be
very;confusing.;Some;people;with;bad;MRIs;have
done;quite;well.;For;me,;MRI;is;important;but;it’s
just one of the indications to be factored in. I’d be
likely;to;correlate;one;or;more;MRIs;with;other
findings before making a recommendation.”
Symptoms need to be managed
Many of the things people with MS go through
need symptom management approaches, not
a;change;of;the;disease-modifying;drug,;Rolak
pointed out. “Maybe the person needs more
baclofen for their spasticity, or meds to get their
bladder under control.”
A range of options, a range of opinion, a
range of responsibility
It should be noted that three of the doctors who
spoke to Momentum for this article are members
of the National MS Society’s Clinical Advisory
Board. The questions they raise here are being
