Neuromyelitis Optica

Neuromyelitis Optica

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this is a page where people with NMO can talk to each other for support or to find better treatment Outcomes of NMO

The course of NMO is highly variable.

Neuromyelitis Optica is a uncommon disease of the central nervous system that affects the optic nerves and spinal cord. Individuals with NMO develop optic nevritis, which causes pain in the eyes and vision lose, and transverse myelitis, which cause weakness, numbness and sometimes paralysis of the arms or legs, along with sensory disturbances and loss of bladder and bowel control. there is no cure

01/13/2015

the Guthy- Jackson page

Patient Health Alliance Rooted in Connection 🌿
Building support and community for those navigating NMOSD and rare disease.
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01/13/2015

someone had asked about plasmapheresis a bit ago. so i dug into it just a little, here is a little i found hope it helps.
http://health.ucsd.edu/specialties/apheresis/Documents/Plasmapheresis.pdf


http://www.neurology.org/cgi/content/meeting_abstract/80/1_MeetingAbstracts/P02.196


http://www.healthline.com/health/plasmapheresis

health.ucsd.edu

This technology shows nurses where your veins are 01/12/2015

Wish all of us could afford this lol. Expecially after the trouble I had with veins blowing with my last 5 days of IVSM im thinking about just getting a port thou im sick of being stuck so many times and ready for at least one thing in my life to be simple lol.

This technology shows nurses where your veins are If you’ve ever given blood, you’ve likely experienced the discomfort of having a nurse struggle to find your vein. And if you’re anything like me, you’re probably used to someone jabbing at your arm for five minutes before giving up and moving to...

01/12/2015

This is the link again to the Guthy-jackson foundation. They research NMO and have a GREAT website. www.guthyjacksonfoundation.org

01/11/2015

I know this is a problem for a lot of us and it bugs the crap out of me, but I have so many people tell me im faking this disease cause I dont look sick all the time. I really wish everyone could see what goes on for real in our live and feel just part of what we deal with. Like rite now im hurting so bad from IVSM I want to just die but i did the treament to try to help leg problems and bladder control problems I was having and it hasnt help the bladder problem so now im still dealing with that and massive pain. But because only my husband sees the repercussions of my bladder control problem people seem to think I did the treament for nothing and I just want to scream at them cause why would anyone want to put them selves threw this for nothing! Sorry rant over lol!

01/11/2015

Love this womans page. They dont fully know if she has MS or NMO but she puts things out there that we go threw that most of us are scared to talk about cause of what will get said back to us!

Photos from Neuromyelitis Optica's post 01/06/2015
01/06/2015

So I havent posted in a long time but I have had a lot going on but this week is going to be a first for me and im wondering how many others have done this but this week I will be infusing myself with Solu Medrol at home for five days. a nurse did put a PICC line in but I will be starting the ivs and stoping them on my own at home. And also to the new likes to the page if there is anythimg you would like me to research and post let me know. And also here is the web site to the people who research NMO (great site fyi) www.guthyjacksonfoundation.org

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