Thousands Of NMO Patients Are Misdiagnosed With MS
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Mayo Clinic Neurologist Reports: "Thousands Of NMO Patients Are
Misdiagnosed With Multiple Sclerosis"
13 Nov 2009
Thousands of Neuromyelitis Optica (NMO) patients are potentially being
misdiagnosed with Multiple Sclerosis (MS), according to Mayo Clinic
Neurologist Sean Pittock, M.D., largely due to lack of awareness of
NMO within the medical community. Dr. Pittock shared this finding with
more than 50 of the world's leading doctors and medical researchers -
from Harvard to Oxford - who gathered at the 2009 NMO Roundtable
Conference, sponsored by the Guthy-Jackson Charitable Foundation.
NMO is a rare and debilitating disease that attacks the optic nerves
and spinal cord, often causing vision loss, paralysis of legs and
arms, and sensory disturbances. The Guthy-Jackson Charitable
Foundation has brought together these researchers to help find a cure
for this rare disease.
Dr. Pittock came to his conclusion based on ongoing research at the
Mayo Clinic. Of the 1,200 blood samples that are sent to Mayo Clinic's
neuroimmunology laboratory for NMO antibody (NMO-IgG) testing each
month, approximately 70 new patients test positive for NMO, which is
surprisingly high considering it is believed to be a rare disease. Of
the 70 patients who have the NMO antibody, Dr. Pittock has found that
a majority were previously thought to have MS.
Making the distinction between MS and NMO has been greatly assisted by
Mayo Clinic's recent discovery of this NMO antibody. In fact, this is
the first biomarker that has shown to be sensitive and specific for
any central nervous system (CNS), inflammatory demyelinating disease.
"It's important to differentiate NMO from MS as these disorders are
treated differently," says Dr. Pittock. "The identification of this
novel antibody marker will hopefully assist neurologists in making a
correct diagnosis of NMO, rather than MS."
Dr. Pittock believes that part of the reason for the lack of awareness
of NMO is that there was no biomarker until recently, and
traditionally, NMO was considered by many in the medical and research
communities to be a form of MS, a difficult disease to diagnose.
Recent clinical and pathological studies now support the concept that
NMO is a distinct disease from MS.
"It's important for the neurologists to be aware that NMO is
associated with symptoms other than optic neuritis and transverse
myelitis. NMO patients can have intractable hiccups, nausea, vomiting
as well as problems with thermoregulation," says Bruce Cree, M.D.,
Ph.D., M.C.R. of the University of California San Francisco Multiple
Sclerosis Center. "It is important to test for presence of the anti-
aquaporin 4 antibody, in the setting of neurological illness
presenting with these symptoms as well as optic neuritis and myelitis,
even in patients who have abnormal brain MRI findings. Some of these
abnormalities can appear to be identical to those seen in MS, whereas
others are more distinct of NMO."
At the conference, Mayo Clinic Neurologist Dean Wingerchuk, M.D., also
reported that the prevalence and incidence of NMO have not been firmly
established. Based on current data, in aggregate, it suggests that
there are likely more than 4,000 people with NMO in the United States.
That is why the Guthy-Jackson Charitable Foundation is launching a
significant medical education campaign to ensure that doctors
nationwide are aware of the differences between MS and NMO. Doing so
will help patients get the appropriate treatments and will help more
researchers collect the best data in their pursuit of a cure.
Cosmetics trailblazer Victoria Jackson established the foundation in
July 2008, one month after her daughter's diagnosis. The foundation's
approach is to provide bureaucracy-free funding to researchers willing
to share data to help find a cure.
"I am on this mission for my daughter, and for the thousands of other
families who have seen their world turned upside down by NMO," says
Jackson. "Through our work at the foundation, more and more, we are
hearing from NMO patients who have been previously diagnosed with MS."
While the first two days of the conference focused on research, the
third day will take an emotional turn. Today, the conference, for the
first time, will host a patient session dedicated to those affected by
NMO, enabling them to engage in a dialogue with the medical community
and to share personal stories with others affected by the same
disease. Most of the patients will be meeting other people diagnosed
with NMO for the first time.
Patients who attend the conference also will be enrolled in the newly-
established Guthy-Jackson Repository for NMO to collect much-needed
blood samples. This innovative repository is critical to future
research.
"For me, this has been a very lonely journey. NMO needed a voice and a
face to make it real for the rest of the world. It has that now," says
Candace Coffee, a young woman who was diagnosed more than six years
ago. "Those of us struggling everyday with NMO, feeling the weight of
its effect on our lives, finally have an advocate."
Source
The Guthy-Jackson Charitable Foundation
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