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Joyce wrote:
> sounds a bit scary, I have a question though, someone I talked to the other
> day said they had benine (sp) MS, whats that ? anyone know ?
hi Joyce,
when i was diagnosed in '90, at that time, there were three 'recognized
types' of M.S.: Benign, Relapsing/Remitting, and PP.
at the time 'benign M.S." was considered a sub-type of RR, where a
person would have one documented M.S. attack, then for the rest of
their disease course, they may never have another one, or they may have
very mild relapses, few and far between.
currently, one M.S.-like attack, positive MRI, and then no relapses is
known as 'CIS,' or 'Clinically Isolated Syndrome."
the Mayo Clinic still recognizes "benign M.S.," and unlike i believe
pretty much EVERY other well-known and well-respected medical
institution, Mayo does NOT recommend getting folks on a CRAB as soon as
possible, because they've found that CRABs provide no benefit, and have
impacts on health, which would make them useless for someone who's NOT
going to have another attack. they follow their M.S. or
possible/probable M.S. patients for one year before recommending for or
against the disease modifiers, unless they've got an aggressive disease
course right from the git.
during the years since 1990, 'benign M.S.' has fallen out of fashion,
and Secondary Progressive has been added as a sub-type of RR. unless
you're getting your care at the Mayo Clinic, that is, i guess. anyone
here go there? what do they say about benign M.S.? i find this all very
interesting! seems like every neuro in the country wants to slap you
straight on a CRAB drug at the first sign of *possible* M.S., but the
Mayo, highly esteemed, says waiting is better.
i think the reasons they don't mention Benign M.S. much anymore is more
PC than medical -- many patients resented being told they had "benign"
M.S., when they had invisible symptoms, but were flattened by fatigue
and pain -- when they FINALLY recognized that M.S. CAN cause pain.
that's another thing my first 3 neuros all said -- M.S. DOES NOT cause
pain, period, ever, at all, with the exceptions of L'Hermittes and T.N.
they've learne4d a lot in the interim; some of it stuff that folks with
M.S. already KNEW!
best,
rose
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