Description:
Welcome to Devic's support. Support and information for patients with Devic's / NMO, their caregivers and friends. We also welcome all researchers and clinicians. Please find the time to read over member stories and post your own experiences.
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 NMO Directory
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I posted a copy of the directory and all the information I have from
those that have submitted their information to Grace of myself. If
you have any revisions of would like to be added to the list please
contact me.
The list is posted in the Articles and Pictures section under NMO.doc.
Christine... more »
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2008 CMSC Annual Meeting Audio Slides--Neuromyelitis Optica
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Google Blogs Alert for: Neuromyelitis Optica 2211 Headlines: 2008 CMSC Annual Meeting Audio Slides ... By MDhealthChannel.com 2008 CMSC Annual Meeting Audio Slides: Neuromyelitis Optica. Diagnostic Criteria and Disease Spectrum Dean Wingerchuck, MD Pediatric Neuromyelitis Optica Sean Pittock, MD Asian optic Spinal MS: Same Disease or Different? ...... more »
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"Neuralstem Receives FDA Approval To Begin First ALS Stem Cell Trial"
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I have no idea if this could ever have any benefit to NMO or other demyelenating diseases, but it's something in the right direction, so I thought I'd put it out for anyone who wants to read up on it. [link] Neuralstem, Inc. announced that the U.S. Food and Drug Administration (FDA) has approved its Investigational New Drug (IND) application to commence a Phase I trial to treat Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease) with its spinal cord stem cells.... more »
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Relapsing neuromyelitis optica: long term history and clinical predictors of death [Short reports] (Journal of Neurology, Neurosurgery, and Psychiatry 2009)
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Relapsing neuromyelitis optica: long term history and clinical
predictors of death
P Cabre1, A González-Quevedo2, M Bonnan1, A Saiz3, S Olindo1, F
Graus3, D Smadja1, H Merle4, L Thomas5, J A Cabrera-Gomez6
1 Department of Neurology, Pierre Zobda Quitman Hospital, Fort de
France, Martinique, French West Indies... more »
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CDC Flu Shot Info (Courtesy of Jim/Bumby)
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My MS friend Jim just posted this at the PLM NMO site.
Oct 13, 2009
Flu Vaccines-2009-2010
Regular flu shot: As in previous years, the National MS Society
recommends a regular flu shot as a safe and effective vaccination for
people with MS. The flu shot-which is a de-activated or "killed"
vaccine-can safely be taken by individuals who are on any of the... more »
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Common CYP7A1 Promoter Polymorphism Associated With Risk of Neuromyelitis Optica.(PubMed)
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Common CYP7A1 Promoter Polymorphism Associated With Risk of
Neuromyelitis Optica.
Kim HJ, Park HY, Kim E, Lee KS, Kim KK, Choi BO, Kim SM, Bae JS, Lee
SO, Chun JY, Park TJ, Cheong HS, Jo I, Shin HD.
Department of Neurology, National Cancer Center, 809 Madu 1-dong,
Ilsandong-gu, Goyang-si, Gyeonggi-do, Korea, 410-769.... more »
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N-Acetyl Aspartate Levels May Distinguish MS From Neuromyelitis Optica
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N-Acetyl Aspartate Levels May Distinguish MS From Neuromyelitis Optica
Tuesday, October 27, 2009 - Elsevier Global Medical News
BANGKOK, Thailand (EGMN) - Serum levels of N-acetyl aspartate are
significantly higher among patients with relapsing-remitting multiple
sclerosis and clinical syndromes suggestive of MS than they are in... more »
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FW: Shelia wants you to take action on "Help Bring Awareness to Devic's Disease"!
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Shelia Sheckles
Founder & CEO
SistaMoon Foundation for Devic's Disease
[link]
...
...To: "Anna Flournoy" <flournoya...@hotmail.com>, "Annette Sanders" <msander...@comcast.net>, "Cles Saunders" <attend...@aol.com>, "Dawn Sheckles" <sheckles_d...@hotmail.com>, "Glenora Gallimore" <lono...@yahoo.com>, "Jamie Wilson" <jjw_too...@yahoo.com>, "Kim Smith" <k...@hotmail.com>, "curtis sheckles" <butch_sheck...@hotmail.com>, "N S" <edcoldwinte...@hotmail.com>, "Patricia Denne" <pretty_pat...@yahoo.com>, "Simone Sheckles" <simonesheck...@yahoo.com>, "Toya Wilson" <to...@texaspipe.com>... more »
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Dr.Weinshenker - NMO Patient Session
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Finally, I finished transcribing Dr. Weinshenker's talk from the
conference - to the best of my ability.
Enjoy, next I will work on Dr. Claudia Lucchinetti who is also from
the Mayo Clinic in Rochester, Minn.
xoxo, kendall
Dr. Brian Weinshenker:
“The first person who wrapped their arms around me and Ali and talked... more »
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A Daughter's Cure is Priceless (Sandy Banks---LA Times Nov. 28, 2009)
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Victoria Jackson doesn't need this weekend's retail sales to satisfy
her shopping list. She can afford to spend, with her lucrative
cosmetics business and a husband with a billion-dollar infomercial
marketing firm.
They've already put $15 million toward their most important holiday
gift, one that can't be wrapped or put under a Christmas tree, because... more »
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Neuromyelitis Optica Information Requested
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To: Devic's Support
I found your contact information while searching the WebMD website. My family and I are desperate trying to find a treatment for my brother-in-law who may be diagnosed with Neuromyelitis Optica. Doctors are not sure if he has this diseaase or not, they performed the spinal tap yesterday, 11/30/09 and have told us that the results will take 6-8 weeks to arrive. The doctors have determined that plasma transfer would be the best and immediate course of action, the first transfer treatment is scheduled for Wednesday 12/2/09. My brother-in-law is currently located in Chihuahua, Mexico. We are willing to transport him to any hospital that can cure him from this illness. Do you know if NINDS or of any other hospitals or clinics that are performing clinical trials on this disease or provide treatment for this disease?... more »
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Recent Mayo trip
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I did end up going to Mayo for a full neuro & neuro/opth eval . . $1500 later (ouch!)
I didn't really hear anything new - and I really wanted to! . . . like we have a treatment
to get your sight back . . . or you don't have NMO at all! One thing I did learn - they
are just there for education and evaluation . . .not ongoing patient care.... more »
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My Scan--It's after seven and I just got home. :-(
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What a day. I thought that once they got the scan started, that it
would be a quick procedure. Okay, they put in my IV, and a doctor
popped in to explain what they were going to do. Shoot me up with the
isotope and take an immediate scan of the pelvic and hip area for a
comparison film. Three hours later I would start the scan proper. The... more »
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Interesting new discovery about MS
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Today, a friend sent me this link: [link]
According to an Italian researcher, he believes MS is caused by venous
insufficiency in the brain. This is a whole new area of research and
if it proves to be true, makes me wonder about other demyelinating
diseases, like NMO and TM.... more »
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the worst part of this disease
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be patient with me a moment as I just do a little holiday
rant..............
the worst part of this disease, to me, is this time of year. We lack
money because we are either paying for the old medical bills or
preparing for the new ones. No money means not many gifts, not many
decorations. All the traveling we don't do. Gary has not been able to... more »
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Western blot analysis for the detection of serum antibodies
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Western blot analysis for the detection of serum antibodies
recognizing linear Aquaporin-4 epitopes in patients with
Neuromyelitis
Optica
Fabiana Marnettoa, Bianca Helliasb, Letizia Granieria, Jessica Frauc,
Agata Katia Patanellad, Petra Nytrovae, Arianna Salaa, Marco
Capobiancoa, Francesca Gillia, Antonio Bertolottoa... more »
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Bad News
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Hi Everyone, Just thought I would let everyone know that my long term through my work just got denied. We are going to appeal it but I don't think I have much to go with. Oh boy this sucks. I'm thinking I should just go back to work. Thanks for letting me vent. Shannon C
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SPAM ALERT FOR MEMBERS.
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Ok, I've received several emails at the site address, in which it is
stated that *Photos have been posted of you on the net. You KNOW what
kind *. Then of course, the email advises you to go to a naughty
website. If any of these emails slip through, and you receive one,
please forward it to me so that I can ban the user and ISP.... more »
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