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Grace's Friends' blogs

To our NMO Family...

May 8, 2012 by Collinsmommy   Comments (0)

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

GJCF YouTube Channel

April 27, 2012 by Derek Blackway   Comments (2)

The GJCF NMO videos are now on the GJCF YouTube channel! Watch over 50 videos about NMO ranging from science to advocacy. Click the link below to watch NMO videos and don't forget to subscribe to our channel. Also, send this link to your contacts: http://www.youtube.com/gjcf2010

Where Do AQP4 Antibodies Fit in the Pathogenesis of NMO?

April 26, 2012 by bumby   Comments (0)

Abstract

Recent advances in the field of neuromyelitis optica (NMO) research provided convincing evidence that anti-AQP4 antibody (AQP4-Ab) not only serves as a highly specific disease marker, but also plays an essential role in the pathogenesis of the disease. Although it is now widely recognized that AQP4-Ab induces astrocytic necrosis in a complement-dependent manner, additional triggers are also suspected as a prerequisite for the development of the disease. Unraveling these unresolved aspects of the disease will provide substantial insight into still controversial issues in the pathogenesis of NMO.

http://www.hindawi.com/journals/msi/2012/862169/

Re: [Devics-spectrum] know your rights

April 19, 2012 by amelia   Comments (0)








I would be very interested in this book. My life
has been so messed up lately I could have missed a post.

amy and gary clark

Re: [Devics-spectrum] Medication Fears

April 10, 2012 by Horselover7562   Comments (1)

Of course we would not be infuriated with you.  You have to make your own decision.  We just want you to do so with your eyes open and with all the facts.  

Tracy

---- [email address removed] wrote:

=============
I am thankful for everyone's input....you are opening my eyes in a different way. I am so sorry to hear of the lives lost to NMO :( I think you guys are right, I am 32 with two children and I should count my blessings if the drugs can keep me active in their lives for now! It's just a hard concept for me to swallow...my mom has been diagnosed with MS for 20 years and only needs a cane. She swears she is better than most because she didn't bombard her body with the drugs and instead takes vitamins and exercises. I realize MS is a different animal, but it is still embedded in my brain. I will post again after my appt. I realize that with some of your guys experiences, my hesitation may upset or even infuriate you, and I am sorry for that. The spectrum community, I am finding, IS the best way to get to 'the truth' of what may happen. Thank you again!

_______________________________________________
Spectrum is the new home of Devic's Support

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Re: [Devics-spectrum] Medication Fears

April 9, 2012 by Collinsmommy   Comments (3)

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!

Anti–Aquaporin-4 monoclonal antibody blocker therapy for neuromyelitis optica

April 6, 2012 by bumby   Comments (0)

I've seen this information in an article about MS from med page as a small follow-up to the abstract that Gracie bookmarked about a month ago mentioning the anti-AQP4 monoclonal antibody as a treatment for NMO, the three paragraphs below are the relevant ones about NMO from the article with a link to the article below it. Bumby/Jim

But there is a small component of demyelinating disease called neuromyelitis optica, where the immune target may be much more restricted to a single molecule. And in this case, it's the water channel known as aquaporin 4. And that discovery was made by Vanda Lennon and her coworkers at the Mayo Clinic.
So recently Jeff Bennett at the University of Colorado and Alan Verkman at the University of California San Francisco have made an antibody to aquaporin 4. But the antibody has been disarmed so that it cannot cause immunological damage to the water pore. So the strategy is to use that monoclonal antibody as a decoy.
So this is a very exciting approach that we hope can be taken forward into humans with neuromyelitis optica [NMO] and provide the first proof that an antigen-specific therapy will work.
http://www.medpagetoday.com/clinical-context/MultipleSclerosis/31923

Re: [Devics-spectrum] Itching????

March 30, 2012 by Michelle   Comments (0)

This is going to sound bad, but I'm so glad that other people know what I'm talking about when it comes to itching.  I thought I was going nuts!  I'll bring it up to my neuro the next time I see him. I itch CONSTANTLY and it doesn't matter where I itch.  It's all over - even my tongue itches.



Take care,
Michelle M.  :)




-----Original Message-----

From: makajohnson [email address removed]
To: devics-spectrum [email address removed]
Sent: Thu, Mar 29, 2012 11:23 pm

Subject: Re: [Devics-spectrum] Itching????


Yes, ITCHING, ITCHING, ITCHING!!!!  I've had this since 2004.  Sometimes it has
just been a mild itch someplace, like on my scalp or eyebrow area. But I have
itching always, and sometimes it is almost unbearable like right now all over my
back and one side of my hip.

You've gotten some good suggestions from people already, but here are some
things that help me somewhat: 1800 mg. of Gabapentin per day, sometimes Xanax at
bedtime when it is really bad, no tight clothing rubbing against me, rubbing the
itching areas with a cold wet washcloth, and using itch controlling lotions such
as Sarna or Eucerin Itch Relief (this lotion thing is actually more a
psychological help since our itches aren't skin related, but are nerve related.)
And remember, our symptoms do change-and sometimes for the better! Kathi

“Assay for serine-phosphorylated STAT1 (P-S-STAT1) could distinguish between MS and NMO”

March 22, 2012 by bumby   Comments (0)

This paper offers up a test that may help distinguish MS from NMO, I know that some NMO patients have been mistakenly misdiagnosed with MS, if the test proves to be accurate it could especially help out when patients are NMO IgG negative. Below are a few paragraphs from the article which I think are the relevant ones as well and a link to the article. Bumby/Jim

In a recent paper published by Journal of the Neurological Sciences, a team led by Feng also looked at how the biomarker can help distinguish between MS and a similar disease called neuromyelitis optica, or NMO. Patients with NMO display a sort of false MS, with many of the clinical characteristics of multiple sclerosis. But the disease is caused by a different underlying issue (closer to what’s seen in lupus rather than MS) that can actually be worsened instead of helped by interferon treatment. Thus, for these patients, a correct and precise diagnosis is doubly important.
Fortunately, Feng and her colleagues found that their assay for serine-phosphorylated STAT1 (P-S-STAT1) could distinguish between the two diseases in a study using previously diagnosed patients. When stimulated with beta-interferon, the samples from NMO and lupus patients showed a larger P-S-STAT1 response compared to the response seen in samples from MS patients. With additional information from expression levels of STAT1’s genetic targets, making up an “interferon signature” for the diseases, the researchers could accurately sort the patients to their appropriate diagnosis.
“The interferon signatures were important in differentiating among these three diseases,” Feng said. “We identified MS as the only time those signatures are lower. In NMO, it’s higher. NMO is actually more active like lupus, not MS. That can help us to understand why this disease occurs, and why, unlike MS, interferon is not a therapy for NMO.”
http://sciencelife.uchospitals.edu/2012/03/22/bringing-focus-to-a-blurry-diagnosis/

[Devics-spectrum] Email Address Change

March 16, 2012 by Michelle   Comments (1)

Hello everyone,



I am changing my email address to:   [email address removed]  I'll keep the AOL address for a little while longer, but I'm trying to move all my email communication to my Charter address.


Thanks so much!
Michelle :)