Gracie, Janice should watch that special you were on!! Janice, Gracie is our movie star, doncha know??? Jeanne
-------Original Message------- From: Grace M. Date: 4/25/2009 8:45:27 AM To: tmic-list@eskimo.com Subject: [TMIC] Re: Janice--what is NMO? 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
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