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Does anyone out there have Devic's disease?

By March 3, 2010 - 11:26am
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Right now my treatment for my condition consists of taking an immunosuppresant agent every day. I used to also take a small dose of Predinose, however I was recently diagnosed with avascular necrosis of the hip and shoulder, and can no longer take steroids. Avascular necrosis is basically when there is no blood flow going to the bone. An orthopeadist must be consulted for my care concerning that, but I am curious if anyone else out there has Devic's and is controlling theirs.

I have a great neurologist, and he would like to switch the immonosuppresant I now take to another one, but I have some fears, as Ive read up on the other one and it carries risks with it that I'm not ready to face.
Please, please, anyone out there?? =)

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EmpowHER Guest

Hello all,

My fiancee is just 22 and she has recently been struck down with suspected NMO. We are still awaiting some official diagnosis. It back in February 2016 in her right eye and then in May 2016 her left eye went the same way. She has now become partially sighted and they are not sure if she will ever regain full recovery. Fortunately, she has not had any further attacks as yet and she is about to have some infusion to prevent any potential relapse.

It's good to see there is support out there for people like her, it's just such a shame.

September 26, 2016 - 3:43am
EmpowHER Guest

I am here. Or should I say, still here. I have had Devic's disease since 1985. No one knew what it was. I sarted with optic neuritis, sent into remission and relapsed strongly in 1992 with transverse myelitis. I have been on steriods/immunisuppressants for decades. 7 years ago another respite of remission. Just 2 months ago, the devil is back with a vengence. I am looking to have a plasma exchange as the steriods are not working. Currently waiting for Cellcept to work but that can take 6 months to be effective - I don't have that amount of time.

March 4, 2012 - 10:13pm

Hi Lisa,
Let me first start by saying I am so sorry to hear that your son is struggling with this very ugly disease. He is so young.

Thank you so much for the information on the support group. I'm actually already a member! I've shared my story and I've read many stories also. Do you find that the medical professionals are vocal though?? I don't see much in terms of feedback from them...
Maybe I'm not utilizing it as much as I should...

Also, thanks for the link to Collin's Quest. It's great.

Take care. Stay strong...
Its funny, I don't know you but just from reading your blog and seeing you on Collin's site, your love and support is just like the love my mom has for me. Although I'm much older (I was diagnosed @ the age of 24) my mother is always at my side. I say all this to say, you are the most important person in his life right now. And even though he may not say it enough, thank you thank you thank you, for being there for him!

Talk to you again soon.

August 9, 2010 - 8:32am
EmpowHER Guest

HI! My son is 7 years old & has Devic's Disease (neuromyelitis optica). He has been fighting this disease for almost 2.5 years now. While NMO is rare, there is a whole group of us. Our support group is here:

You can apply for membership, or if you send me your email, I can invite you to join. Our group would love to have you join in. We are a close knit group & our members are growing. Please come over & talk to us, read our stories & ask questions. We are all there to help one another. Our group is made up of patients & care givers, plus some from the medical profession. Look forward to hearing from you!

Lisa (mommy to Collin, my 7yo with NMO)
(Personal email address removed by EmpowHER Moderator.)

March 10, 2010 - 7:54am
HERWriter Guide

Dear annseoni

Thank you so much for finding us!

For our readers who might be unfamiliar with Devic's Disease, it is an autoimmune inflammatory condition, with some similarities in its make up to multiple sclerosis but it is not MS. Instead, it affects the optic nerve and spinal cord. Devic's Disease is rare.

Annseoni, you seem to be quite educated on your condition and aware of the pros and cons of certain treatments - good for you! You are an excellent advocate for your own health!

I do hope other people with Devic's see this and respond to you. I have tried to locate some support groups for you but many are defunct or have not had postings in several months.

If you'd like to tell us where you live (you can do this on this thread or by sending a private message) we can look for you there.

Also, have you asked your medical team for support groups near you? I think they would be an excellent resource for you.

I hope to hear from you soon!


March 3, 2010 - 1:43pm
(reply to Susan Cody)

Wow, hi again Susan!
Thanks for this response.
I never saw this comment...
I really need to work my way around this website... the reason I missed this comment is because I'm not that familiar with the site...
But this is great.
As far as help from my medical team, the only places they direct me to are MS groups. I find them to be extremely depressing, and at the end of the day my condition is NOT the same as MS...

I'm in South Florida (Ft. Lauderdale/Miami)...
If there are any support groups that you know of in this area, please let me know.

Thanks again!

August 9, 2010 - 8:14am
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