We just wanted to take a minute to thank you all for everything you did for our family during Collin's illness over the past several years. all the information, help, & friendships we have made with you all will never be forgotten. We appreciate all the thoughts & prayers for our family during our time of loss. the last 5 weeks have been very painful for us as we are trying to adapt to life without our sweet Super Hero. Thank you to everyone of you for everything you did.

We hope to stay a part of the NMO community. though Collin's battle is over, we will still be here fighting for our NMO family. This fight is near & dear to our hearts. No one should go through what Collin went through & our new goal in life is to work to make this stop! We love you all!

We also greatly appreciate the Guthy-Jackson Foundation's willingness to honor our Super Hero by starting the "Collin McDaniel Hope Grant" for the purpose of Pediatric NMO research. It is an honor to our family to know our Collin will never be forgotten. Thank you so much to Victoria, Bill, Ali & all the others who have worked so hard.

Much Love,
Carey, Lisa, Angellyn & Mishelle McDaniel

Hello all and thank you for your patience. I returned home on May 2 and am now starting to address the queries that were received in my absence. Please be patient a bit longer as I have quite a back log. Queries will be addressed in the order in which they were received in increments of 20 per day. Most of you have requested scholarly literature addressing very specific issues and it takes some time to get them together. In the event that you need help with other issues (insurance, contact info for specialists, etc) please email or leave a message on my machine.

Thanks again for your patience.

Grace

Fellow NMO Patients:

Many of you have sent queries to my email. Currently there are 136 messages. Please understand that I am currently in Hinesville Georgia spending time with my daughter and son-in-law, who have just had their first child (my first grandchild). I will be returning home on May 2, and will be resuming my advocacy work at that time. Queries (both email and telephone) will be answered at that time in the order in which they are received. Thank you for your consideration.

Grace

We've updated the "Connect the Docs" section on our website! Known as "Mapping NMO" you can find NMO doctors, NMO Advocates and NMO Blood Draw sites in one easy location on our site. With your help we are spreading NMO awareness around the world! Suggest an NMO doctor, become and NMO Advocate or schedule your NMO Sample Blood Draw by visiting: http://www.guthyjacksonfoundation.org/mapping-nmo/

Take the drugs...the alternative could be death.  If they work, take them!!!  We risked it all for Collin, but in the end, none of the meds topped his flares.  Trust me, you don't want the alternative!!


~Lisa~
Your FAVORITE Jewelry Lady!

***FREE*** Jewelry for you!!!









On Mon, Apr 9, 2012 at 6:53 PM, Lea Long <



 
You're not crazy!  It's a logical conclusion.  I felt the same way - that these drugs
we need to take have to take it's toll on our bodies and can't possibly be "good".
I question it and ask my neuro at least once a year!  Bottom line is he reminds me
that the alternative is to risk further permanent damage.  I'm already blind in one eye
and have lost strength and coordination in my legs.  I'm only 50 w/3 active boys,
and have alot of living left to do and realize that I need to do what I can to preserve
my eyesight and mobility.  He always reminds me that it isn't matter of "if" I will have
another attack - it's "when".  I've had numerous major attacks since 1998 - although
I recover somewhat - it's never 100% and I lose more every time.
 
Unfortunately you can't wait until you have another attack - it's too late at that point.
You're lucky you haven't had any life-altering attacks yet.  I lost my eyesight because
I was mis-diagnosed and taking Avonex for MS.  I always wonder "what if" I had been
on a NMO therapy sooner . . . but unfortunately NMO patients are riddled with "what if".
 
Please don't stop without having a real sit down w/your neuro.  You're lucky you were 
diagnosed before you had any serious damage - that is not the case for most of us!


 
 



 
-----Original Message----


From: lnsward <
To: devics-spectrum <
Sent: Mon, Apr 9, 2012 6:36 pm


Subject: [Devics-spectrum] Medication Fears





Hello everyone....I have been diagnosed with NMO sinse August 2011 and my Neuro

started me on Cell Cept. Recently I decided to stop taking the medication

because something about having a weakened immune system scares the heck out of

me. I am curious to what everyone's thoughts are...I haven't had any 'life

altering' attacks yet, and I feel like I would rather deal with NMO than the

possibility of cancer or numerous other things.....Am I naive or crazy??