A random sample of 493 multiple sclerosis (MS) patients registered with the
Northern California Chapter of the Notional MS Society was surveyed by mai
l and subsequently interviewed with regard to their MS, life style, diet, m
edical treatment family history, and insurance coverage. Of this sample, 16
8 patients (34%) returned completed questionnaires. The answers on the ques
tionnaire were entered into a database and scores on the extended disabilit
y status scale (EDSS), the neurologic rating scale (NRS), the ambulation in
dex (AU, and the mean disability scale (MDS) were determined from the patie
nt's answers to a portion of the questionnaire using a previously validated
conversion program. This survey population of /68 patients seemed to repre
sent well both the random sample and the frame population from which it was
drown. Patients commonly experienced symptoms for which there are medical
treatments currently available such as bladder symptoms, fatigue, spasticit
y, pain, and depression. Surprisingly, however, with the exception of spast
icity, patients were only infrequently treated for these complaints. In add
ition, despite the recent approval of the beta-interferons and copolymer I
in the treatment of MS, only 74% of the appropriate candidates for such tre
atment had these options discussed with them and only 45% ever actually rec
eived such treatment Certain clinical features and dietary habits were stro
ngly associated with both EDSS scores and total disability. Not unexpectedl
y, either a progressive disease course or the presence of neurological dysf
unction in any one of a number of functional areas (e.g bladder, vision, co
gnitive change, etc.) correlated with higher EDSS scores and greeter total
disability Fatigue was also strongly correlated with disability. Indeed, fa
tigue accounted tin whole or in part) for 65% of the disability experienced
by patients; an observation which only underscores the fact that fewer tha
n one third of the patients who experience fatigue have ever been tried on
medications. Interestingly, the only factors associated with lower EDSS sco
res and less total disability were exercise and alcohol consumption. Such a
ssociations from a single survey, however, do not establish causation. It i
s the purpose of this study to establish a baseline level of function withi
n this survey population so that future surveys in the some set of individu
als can allow a prospective assessment of how health outcome has influenced
different aspects of the patient's medical care, lifestyle, and insurance
coverage.