The MS Report - Latest comments

In response to: Cytoxan and Rituximab

kathleen O'Neill [Visitor] — Fri, 12 Feb 2010 20:00:38 +0000

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

In response to: Get a Job-Vocational Rehabilitation

Kristin [Visitor] — Tue, 22 Dec 2009 15:09:52 +0000

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

In response to: Get a Job-Vocational Rehabilitation

Bedding sets [Visitor] — Fri, 18 Dec 2009 05:54:38 +0000

best of luck

In response to: Cytoxan and Rituximab

admin [Member] — Mon, 24 Aug 2009 01:16:18 +0000

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

In response to: Cytoxan and Rituximab

Mary D [Visitor] — Sun, 23 Aug 2009 20:11:44 +0000

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.

In response to: Get a Job-Vocational Rehabilitation

Barbara [Visitor] — Wed, 29 Jul 2009 00:17:07 +0000

Way to go Jen.

In response to: Cytoxan and Rituximab

Maggie B. [Visitor] — Mon, 20 Jul 2009 14:45:48 +0000

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.

In response to: Patience

Debbie [Visitor] — Fri, 26 Jun 2009 16:37:55 +0000

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