Looking for info and people with Neuromyelitis Optica (NMO)

I truly hope they do, it scares me to horror to believe that these pains would never go away. The Institutions working on a CURE FOR N.M.O., need to be BLESSED BY GOD, and given the knowledge and understanding to come up with an effective cure, and or treatment for our pain. I asked my Neurologist if my TONIC SPASMS would go away, or subside and she said, that because of the Legion on my spinal cord(Which is one factor used in the Diagnosis of NMO), that it didn't seem likely that this would just go away, If anyone has a different response, please let us know. GOD BLESS YOU, Paubla.

I was recently diagnosed with NMO. It was a very scary experience especially for my family. How long have you known you had NMO?

Hi @darlarose and welcome to Connect.
We have had a few people talking about Neuromyelitis Optica (NMO) here is the past. I'm tagging @lovelife100 @nece12 @lemonmeringue @luckypaubla1213 @tonia @genevieve in the hopes that they will return and share their experiences with you.

I understand that NMO can be difficult to diagnose and is often misdiagnosed as multiple sclerosis (MS). How were you diagnosed? What symptoms are you dealing with at the moment?

My husband was recently diagnosed with NMO, he received 5 IV bags of steriods is now taking pill prednisone also received 5 plasma exchanges. His left hand and arm were unuseable like paralyzed with a stroke when went to ER.but stroke was ruled out after tests his spinal fluid was sent to the Mayo Clinic for tests and NMO was the diagnosis. after the treatments he can use his hand and arm but not back to normal. Was in the hospital for 22 days. now that he is out has appt. with new Neurologist to followup and prescribe ongoing meds. Also scheduled to go for outpatient therapy.

Hi my name is Jackie I was just diagnosed with devices disease would like to connect with people for support please thanks

Hello Jackie, @uniqu3

Welcome to Mayo Connect. I appreciate your post about this rather unique disorder. I did a little research on Devic's Disease and found some information on the Mayo Clinic website, http://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/basics/definition/con-20036360.

It sounds as if this might be a difficult problem to diagnose and can often be confused with a MS diagnosis. As we look forward to getting to know you better, please share with us as you feel comfortable: How were you diagnosed? How long did it take to get a diagnosis? What types of treatments have been suggested?

Teresa

I started in June with bad and different symptoms going on with my body August was when they told me I had NMO.still waiting for infusion no funds so cant start meds. I'm from Wisconsin no support groups here

I have a question is it other ways to get in contact with you

@uniqu3 Who is it that you want to contact? (You did not list a name)

You can send a private message by clicking on the @name and then the option will come up for "private message."

Teresa

I have been diagnosed with Device's disease. Can anyone advise me of a diet or supplements I can take that will help.