*Hello Janice, *
**
*What is NMO? NMO is extremely rare, much more so than TM from other causes
or Multiple Sclerosis. It's a particularly devastating
neuroimmunological disease of the central nervous system. It consists of
repeated attacks of LETM (Longitudinal Extensive Transverse Myelitis) and
Optic Neuritis. Sixty per cent of patients will also present with brain
lesions during the course of their disease, though not in a pattern
consistent with MS. Within five years, fifty per cent of patients will
already be permanently blind in at least one eye (Often bilaterally.) and
permanently paralyzed in at least one limb (Often more.) Within that same
time frame, estimates say that 33% of patients will expire during an acute
attack. It's a BCell mediated disease in the presence of an autoimmune
antibody called the NMO IgG (Current research is attempting to establish
whether or not the antibody itself, is pathological.) Unlike TM or MS,
our lesions are inordinately long (Covering three segments of cord or more.)
and often present with necrosis and cavitations. Also, unlike MS patients,
we do not have the option of *riding out an attack*, but need medical
intervention immediately. Most neuros have not heard of it, let alone seen
or treated a case, so the majority of us end up at the larger teaching and
research facilities.*
**
*I'm one of the lucky ones. I still walk, and can still see. Many of the
members of our Advocacy Group are already chairbound, bed fast, blind, and
more than a few are vented. We have also lost members since our launching
in 2006. It's not a walk in the park.*
**
*Mr. Siegel (President of the TMA) has been instrumental in the growth and
direction of our small group of patients. Not only does he offer great
insight, but gives me those much needed pep talks whenever I am overwhelmed
by the seriousness of it all. He will be publishing a seperate directory
for NMO patients very shortly. I will be forever indebted to him for his
support and help. *
**
*Hope this helps to explain.*
*Gracie *
