Neuro myelitis Optica (NMO). we need help please

[djay021]

hi,
My older sister was diagnosed with neuro myelitis optica (NMO) in monash hospital in australia. She is 25 years old. She got optic neuritis in both her eyes first and then she got bladder retention and she got treated with prednisilone (steroids) she kept getting more attacks and she got paralised. At that time they did a MRI on her and they found out that there was a massive inflamation in her cerebellum and some in the brain. At that point they increased her steriods dose and she responded well.

They gave her a drug called Rituximab in two infusions two weeks apart. I know that its meant to prevent further attacks. She can no walk but it is not yet balanced and her speech is slurry. They are now decreasing her steroids dose but when they decrease it her speech becomes worse.

We are in a desperate situation. I am just wondering if there are anyone out there who have suffered from the same illness. Could you please tell me if Ritoximab is a drug that would work? and would she get further attacks and would she be able to talk and walk again?

Here in monash they have only seen my sister as a NMO patient. So they cant say anything. please write to me if you know anything about this. I really appreciate it.

thank you

[Cat Mom]

I was officially diagnosed with MS in Dec 2005. I had ON in my right eye in Jan 2003 but no MS present at that time.

It hit badly in Sept 2005 in the left eye and during the 3 months of MRIs, spinal tap, etc. that lead to the diagnosis, I saw an Optho Neurologist who had me go for a blood test to check for Neuro Myelitis Optica.

It had to be shipped to the Mayo Clinic in the US (I'm in Canada) to be examined. It was negative, unlike the MS tests. I can't remember why the blood test would determine it... but maybe have a look at the Mayo Clinic's website for more information on it.

[Redwings]

Hi djay:
Please go immediately to the website of the Guthy-Jackson Charitable Foundation: http://www.guthyjacksonfoundation.org/.
The site contains a wealth of information about NMO, and through the online community there -- called Spectrum -- you can get in touch with people with NMO who can answer your questions.

Rituxan (rituximab) is often used for treating NMO and has worked very well for some people, but it doesn't work for everyone (it didn't work for me). The Guthy-Jackson site can provide more information about treatment options. Also, the doctors at the Mayo Clinic here in the US will provide consultations for your sister's doctors about her case. You can ask more about that in the Spectrum community. That could be very beneficial to your sister and her doctors, to ensure that she has NMO and not a different condition that should be treated differently, and to adjust her NMO treatments as needed.

Finally, some things about treating and managing NMO are the opposite as for MS, so it's critical to get into the NMO community and follow only the advice provided by doctors and patients who understand NMO. So, I'll send you off to the the Guthy-Jackson site now. I hope your sister starts feeling better soon, and I send my best wishes for both of you.

[wkikta]

NMO is also known by the name Devics. It usually attacks the Spine and Vision, a friend of mine is blind and in a wheelchair.

[Redwings]

Just to be clear, NMO/Devic's disease does not attack the spine. The spine is made of bone and is part of the skeleton. NMO is not a disease of bone. It's an autoimmune disease that attacks the spinal cord, optic nerves and sometimes the brain.

[Grace53a]

Hello,

I have NMO, having been diagnosed in 2005. None of the current treatments used for NMO are guaranteed to prevent attacks. Keep in mind that the goal of using Rituxan (Rituximab) or any of the other drugs currently used for treatment, is to *hopefully* prevent attacks and to mitigate their severity if and when the occur. I currently use Rituxan and have only had two mild episodes with my eyes, since starting it in 2007.

Redwings is correct re: The Guthy-Jackson Foundation. They have the most comprehensive libraries of NMO scholarly literature on the web. It's the best place to learn about the disease. As time has passed, the research community is slowly discovering that the differences between NMO and MS, are more common than the similarities. NMO is not MS and cannot be treated as such.

Hope to see you at Guthy-Jackson.

Grace (NMO+ since 20050