 Women
and Multiple Sclerosis
By Ruth Eisner
For years Denise Bochetto just wasn’t feeling
like herself. The married mother of one from Massapequa
would experience a burning sensation in her leg
that was so painful it felt as if someone was
holding a lit match to her limb. She’d fall
often, for no reason at all, stop midway in a
sentence completely forgetting what she was talking
about, have blurry vision and sometimes slurred
speech.
Although her symptoms would come and go, Bochetto
spent years going to different doctors who each
drew different conclusions. One said she had “trucker’s
syndrome,” a condition in which fatty deposits
form on the nerves. He said she would need surgery
to correct it. Another diagnosed her with “post
traumatic stress syndrome” and suggested
therapy.
“He gave me names
of psychologists and I threw them out,”
says Bochetto, 47. “I knew physically that
there was something wrong with me and I wasn’t
crazy.” At one point her symptoms became
so severe she thought she had suffered a stroke
or had Bell’s palsy. After her doctor took
an MRI of her brain and did a spinal tap, the
results were still inconclusive.
In 2002, nearly 10 years from Bochetto’s
first diagnosis, she was officially diagnosed
with relapsing-remitting MS, the most common form
of multiple sclerosis, which includes flare-ups
followed by partial or complete recovery periods.
For some the news would be devastating, but for
Bochetto it was a victory. “I felt so relieved.
I cried out of sheer joy because I knew I was
not crazy. The mystery was done and now I was
able to deal with my condition and move on with
my life.”
DIFFICULT
TO DIAGNOSE
Despite this age of advanced medical technology,
it is not uncommon for an individual to get a
delayed, missed or incorrect diagnosis of MS,
partially because of symptoms that come and go,
particularly in early MS, which might indicate
a number of possible disorders. Also, some symptoms
are just too difficult for physicians to interpret.
“Unfortunately there is still
no single diagnostic test for MS,” says
Patricia A. O’ Looney, Ph.D., vice president
of biomedical research at the National Multiple
Sclerosis Society. “You can’t just
take a sample of urine and say you have MS, which
makes the diagnosis of MS sometimes difficult.”
O’Looney adds, “The good news is that
because of the MRI there has been improvements
in enabling physicians to make a more accurate
diagnosis.”
Yet, there are still those who know all too well
the feeling of being misdiagnosed. For years,
Robin D’Andrea, 35, of Riverhead suffered
from neck pain. After seeing an orthopedist she
was diagnosed with a pinched nerve. An MRI confirmed
it. Still not satisfied, D’Andrea went to
another doctor who told her she had herniated
disks in her neck. Over the next year, D’Andrea’s
symptoms worsened. When she started experiencing
shooting pains in her arms and down her back she
rushed back to her orthopedist who assured her
that it was just her pinched nerve acting up.
To help alleviate some discomfort, he referred
her to a physical therapist. Months later the
right side of D’Andrea’s face went
numb. After seeking the help of a neurologist
and undergoing extensive testing, D’Andrea,
27 at the time, was diagnosed with MS.
“There were clear symptoms of MS
that they missed because the doctors kept on chalking
it up to herniated disks in my neck,” says
D’Andrea, who is expecting her first child
this fall. “What is frustrating is that
I could have been on medication to treat the MS,
because once I was diagnosed I had a whole slew
of symptoms for two years and had to stop working
because of it.”
Three-quarters of those with MS are women, with
the onset of symptoms occurring, between the ages
of 20 to 50. Women, in fact, are two to three
times more likely than men to get MS. Why it is
more prevalent in females is unclear but there
are differing theories, according to Patricia
Coyle, M.D., director of the Multiple Sclerosis
Comprehensive Care Center at the Stony Brook University
Medical Center, who is also a professor and acting
chair of neurology.
“If you look at the immune mediated diseases
it is predominantly female,” says Coyle,
who is studying the hormonal influences that may
contribute to the onset of the disease and the
three-month postpartum period that women experience
after the birth of their child that typically
causes a higher relapse rate. “Women have
stronger immune responses than men and perhaps
that makes them more vulnerable to autoimmune
disorders, such as multiple sclerosis, lupus,
rheumatoid arthritis and diabetes.” She
adds, “I don’t think it is the only
factor. There is genetics, environmental exposure,
but this does play an important role.”
Forty-three year old Elena Ennever of Medford
has lived with MS for the last 23 years. When
she was 20 years old, after the birth of her first
daughter, she knew something was not right.
“My speech slurred. I was unable to hold a spoon
to feed my baby. I couldn’t walk and had to crawl
on the floor to get around,” says Ennever.
Her doctor referred her to a specialist, who told
her that she had suffered a mild stroke. Years
went by without Ennever having any recurring symptoms,
until one day in 1995 when she suddenly began
to stagger, have double vision and slurred speech.
After a battery of tests were performed including
an MRI of the brain, the mother of two, was diagnosed
with MS. It was then when she learned that the
symptoms she had experienced more than two decades
ago were the early signs of the disease. In November
2006, when Ennever’s older daughter, Alexandria,
23, started complaining of numbness and double
vision, Ennever immediately took her to an MS
specialist, who after extensive testing confirmed
that she too had multiple sclerosis.
KNOW YOUR BODY
Brian R. Apatoff, M.D., Ph.D., director of the
Multiple Sclerosis Clinical Care and Research
Center in the department of neurology and neuro
science at Weill- Cornell Medical Center New York
Presbyterian Hospital says, “Ten to fifteen
percent of females have come to my practice where
alternate diagnoses were considered before a diagnosis
of MS was more correctly reached.” Apatoff
adds, “In some cases, carpal tunnel syndrome,
fibromyalgia, lupus, rheumatoid arthritis, lyme
disease were some of the diagnoses given. Sometimes
patients are given a psychiatric label such as
depression, anxiety, fatigue which could be the
initial manifestation of MS.” Patients should
be in tune with their body, providing a detailed
synopsis including medical history that may offer
clues to a possible primary neurological disorder.
“If patients are not satisfied with a diagnosis
they should seek a second opinion. If there is
still uncertainty get another opinion,”
he says.
“The progress, severity and specific symptoms
of MS in any one person cannot yet be predicted,
but advances in research and treatment are moving
us closer to a world free of MS,” says Pamela
J. Mastrota, president and CEO of the National
Multiple Sclerosis Society, L.I. Chapter. To learn
more, call 516-740-7227 or 631-864-8337 or visit
nmssli.org
Ruth Eisner is a freelance writer
who also works with the National Multiple Sclerosis
Society, L.I. Chapter.
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