Hi Regina,

NMO is often referred to as Devic's Disease.  It is extremely rare, though
in the last years I have heard that the number of  documented cases has
climbed to around 1000-1500 here in the States.   LETM lesions are :  Long
extensive transverse myelitis, usually covering at least three segments of
cord, and often more.  At this time, NMO is incurable, and for a lot of
relapsing patients, like myself, the prognosis is poor.  We incur our damage
during the acute attack.  Our lesions are different in that they are often
necrotic (Tissue death.) with cavitations.  In our variety of optic
neuritis, there is also axon death in the optic nerve.  The Mayo Clinic was
the very first facility to devise a test for this disease, discovering that
unlike MS or Transverse Myelitis, the disease is antibody dependent.   The
sad thing is that neuros as a whole, are so unfamiliar with it and often
misdiagnose it as MS, meaning that the patient is deprived of the
appropriate treatment, often with catastrophic results.   Currently, I am
undergoing Rituxan infusions.  It has had some promising results in the
initial clinical trials for NMO, and the trials are still going on.
Whenever my oral drugs stopped working, my neuro decided that it was my best
shot at lengthening the amount of time between attacks and also making them
more manageable wheneverthey do occur.   Hope this helps.

Grace

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