> > *Hi Janice, * >
> *It's Mayo treatment protocol for NMO that has kept me on my feet and > still alive. *What would Hopkins or Mayo do that would make any difference > in your recovery?* For me at this point, nothing---it is what it is. > Sometimes we just have to bite the bullet, swallow hard, and accept things > for what they are. I know that I will have future attacks of TM, blindness, > and eventually brain lesions---unless of course, a cure is discovered. I > also know that I could die during an acute attack. More than a few of our > Advocacy Group members have passed since our launching in 2006. That being > said, it is research by the bigger and more prominent facilities, that has > allowed me to have the standard of care that I now enjoy. I've got an > unbelievable neuro here in PA. I consider myself to be so lucky that he > took an active interest in my case, and successfully diagnosed me. He is at > the University of Pittsburgh Medical Center, and it is quite prestigious in > it's own right. * > > *I**n the beginning, whenever I was new to all of this, I spent my waking > moments grasping at straws. *Maybe they're wrong---they have to be wrong? > Maybe if I did this? Maybe if I saw this neuro or that neuro? Maybe if I > went to this hospital?* ad infinitum. I quite effectively robbed myself of > a good quality of life. I was just too busy wallowing in my own grief at > that point. One day, I just made up my mind that I would dedicate myself to > learning about this *thing* and helping and educating others. It was the > one thing that i could still do at that point. * > > *This is a rambling post I know, but there is a point. Whenever I decided > to get busy doing what I had to do, I started to collect any and all > technical papers that I could get my hands on concerning this disease. What > I found, was that the bulk of research was coming out of the Mayo Clinic and > Japan. I managed to locate other patients nationally and worldwide (And it > was not an easy task as NMO is incredibly rare, much more so than TM from > other causes.), and discovered that a high percentage of them were Mayo > patients. They were diagnosed and placed on treatment protocols, and > were experiencing the best degree of stability that could be expected. Now, > we always suggest a visit to the Mayo for newly diagnosed patients, or those > who are still in the diagnostic process. Their level of expertise is > phenomenal. Right now, I am sitting her on pins and needles waiting for the > American Academy of Neurology meeting to be completed, as Phase I of the > NMO+ Genetic Study that myself and many of our members are participating in, > is complete and preliminary results are to be announced at the meeting. My > own neuro will be there, but is unable to stay for the entirety, and I > cannot wait to see him in a week or two, to find out what the scoop > is. The point of all of this is---if you have an opportunity to go to the > Mayo or Hopkins, by all means do so. Will you get a different slant on your > disease or disorder? Maybe not, maybe all has been done that can be done, > but at the very least, you will know that you have been seen by the best, > and can put your mind at rest. * > > *I hope that I haven't offended anyone. * > > *Grace* > > * * > > * * > > * * > > * * >
