RE: [TMIC]

[kimr1999]

ok that is scary, I also dreamed I was roller skating agan (ok it was the 70's and roller disco) but I was moving all over the floor!

-------------- Original message from "Tami Streeter" <tstree...@abf.com>: --------------

Grace,

 

Thank you for your post.  I find myself longing to go there just to know I have tried everything too, but it is so far and financially out of the question for now.  My dreams for “big lottery winnings” have just changed just a bit from what they used to be.  

Speaking of dreams, I dreamed I was roller skating last night – it was wonderful and though some may think it silly, it gives me hope.

 

Thanks,

Tami

---

From: Grace M. [mailto:grace...@gmail.com]
Sent: Friday, April 24, 2009 10:11 AM
To: Janice
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC]

 

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.  

 

In 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