i have just been diagonsed with devic diease which is
is very rare in ireland . i have got 4 relaspes in the
last year which at first they taught it might be ms
but i hadn't any lesion in the brain just inflammation
in my spine. i have a problem with my walk and my balance
the strength in my legs is not good but i just after getting
the first round of treatment Rituximab and i have to get
it in 15 days time. i have got steroids as well which does
improve me for a while but then i get a relaspe . i have
a weakness i my eye but never lost the sight thank god
i would love to hear from people with the same problem
as i so scared of what going to happen in the years to come
i know they have come a long way with treatment for ms
so hopefully it will be the same for nmo
kathleen

Thanks. There is much very useful information on your blog for me.

best of luck

I can only tell you what my doctor told me. Devics is definitely treatable/manageable if caught early enough. The other things he told me are probably what you already know. NMO attacks the spine and optic nerve causing potential blindness and significant physical deterioration including loss of bowel and bladder control, loss of function of extremities and loss of sensation. The lesions that show up on an MRI of the spine have a telltale threadlike quality to them, meaning they are long and skinny as opposed to MS-type dots. They have recently identified an antibody which, if present, will yield a likely positive Devics diagnosis, it's called IgG.

In terms of prognosis and therapies, I am told that Rituxan is one of the preferred treatments. If you found my website, you probably have found many others that give specific information about the disease. I have found a couple of sites that might be helpful to you. Certainly, they have better information than I would be able to provide…

www.myelitis.org/devics_disease.htm - There are some good links as well as information here.

www.msworld.org/forum/showthread.php?t=79794 - Look at the second post: this seems to address your concerns.

http://wiseyoung.wordpress.com/2008/12/18/devics-syndrome-close-to-a-cure/ - This one gives a more in-depth discussion of the disease and its potential treatments.

(I'm sorry, I haven't figured out how to put HTML links in my comments. You will need to copy and paste those links into your browser)

Good luck with everything. Please let me know the results. I will keep your son in my thoughts and prayers.

Jennifer

My 19 yr. old son was diagnosed with ON last month. In the past week, he is having trouble seeing with his good eye. Before the ON diagnosis, he had 2 brain MRI's, neither showed any signs of lesions so we were thinking it wasn't MS. His neuro ophthalmologist mentioned testing him for devic's so we'll be scheduling an MRI of his spine and blood work. My question is, is this a fast progressing disease? If caught this early, can he halt the progression?
Thank you for any insight you can give me.

Way to go Jen.

Thank you all for writing. I have had ON for 8 years first in one eye now in both and am legally blind. I have experienced the "MS hug" which is horrible and scary many times and have loss of bladder when this is occurring. I am weak in the legs and arms. Some days I can hardly walk for the sharp stabbomg pain in my ankles. I first was told possible MS... Negative MRI. Recently tested for Devic's Disease but negative result in the bloodwork. Waiting for MRI result now. Many other symptoms...fatigue horrendous at times. I am so frustrated. Question???? Does anyone have severe, sharp stabbing pain in the ankles, knees, shoulders, neck, writsts? Spasms in the calves, hips, upper arms? Is this a part of MS or Devic's or am I just getting old? Thanks for responses.

love the blog! so you. thankful that MS hasn't changed the personality.

Wow, I can't believe someone is reading! Thank you so much for your post. Do you mind if I ask you a few questions? What made them decide to test you for Devic's? Have you had many MRIs? The only reason I'm unsure is because I do have three or four lesions on my brain, and I guess with Devic's you don't have any, right? My doctor also mentioned something about the spinal lesions having a telltale look; to wit, they are long and thin as opposed to small "blotches." Do you notice much progression since you have been on rituxin? Don't be so sure about the vision problems being foretold as certain. The one thing I have learned about these strange autoimmune diseases is that they are very unpredictable and very individualistic.

Sorry to bend your ear for so long, I was just so excited that you wrote!

i was diagnosed with devic's disease two years ago. i was first diagnosed with m.s. and treated with rebif. this lead to two relapses and i am now in a wheelchair. I have been treated with solumedrol for acute problems: paralysis, bowell and bladder problems, etc. i was treated with a plasma exchange. no help. I began rituxin in august of 2007 and have no relapses. I can walk about 60 feet with a walker. not pretty. i am still confined to a wheelchair but i can stand unassisted. I work everyday a full 8 hours. I have tremendous stamina. I do not have the NMO-Igc antibody and fortunately have had no vision problems even when paralyzed from the neck down. Im sure this gift will come. i'm interested in your progress please keep us informed.

The trip sounds wonderful. For people who face the unique challenges that we do it can be somewhat intimidating. Then again life is always challenging and intimidating. Every damn day! I find that taking any trip with someone who understands the obstacles I face makes it a lot easier and less stressful. I don't know about the Netherlands but my son lives in Germany and he says they are very handicap accessible.

Have a wonderful trip. I look forward to hearing about when you return.

Hi Jen,

Thanks for sharing this very informative, interesting and personal website you have created.
I have taken the liberty of sending it on to the ladies group founded by Marybeth Leonard some 25+ years ago. Marybeth was diagnoised with MS shortly after I met her in 1980. Many of us in the group will be participating in the MS Walk on May 3 in Saratoga.

Thanks again for sharing with me....I think of you often and keep you and Marybeth in my prayers...
Love,
Aunt Priscilla

I don't feel like it's all about the MS. I do agree that most people seem to know someone with MS that is either about to be cured or at death's door. For a while I found this very annoying but after giving it some thought I came up with my own little theory. Everyone has some type of difficulty going on in their life. The thing about handicapped people is that one of your problems is apparent to anyone. I think that most people are just trying to make a connection and show their empathy. Occasionally you'll come across someone who is inappropriate in their comments but the world is full of idiots and the best way to deal with them is to shrug it off.

There are so many things to talk about that have nothing to do with health. I just assume that people are talking with me and not my about MS and generally they are.

Love the website.Very informative and helpful. I've been living with MS for 23 yrs. I am no longer ambulatory and daily living is aways a challange but really life can be hard for anyone, MS or not.
I look forward to viewing this website and taking advantage of all that it offers. I've got a great store for all kinds of rehab equipment and supplies.
www.sammonspreston.com