Looking for info about Devic's Disease / Neuromyelitis Optica (NMO)

Posted by Tonia @tonia, Mar 4, 2012

Hi I came here looking for the same kind of info about my NMO chronic pain . I want to know if my head, neck, back,and eyes are ever going be painfree again. I was diagnosed 3 months ago. I do want tell you my spasms did go away slowly but your spasms seem to be worse then mine. I’m really sorry. My Dr gave me diazapam to help and it did. I also take gabapentin and oxycodone. They also have me taking azathioprine. This is to help supress any future accute attacks. You are the first person I have talked to that has what I have. So I’m sorry I couldn’t be of more help but Ijust had to reply.. Thank you for that and good luck finding the info you need. Tonia @luckypaubla1213

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.

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

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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?

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@darlarose

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

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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.

Liked by Rita Rumph

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

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@uniqu3

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

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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

Liked by Rita Rumph

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@uniqu3

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

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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

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

Liked by Rita Rumph

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@uniqu3

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

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@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

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

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I went 4 years undaignosed – they now think it is NMO, however, there is not optical involvement only spine. Now having difficulty walkin (lately having to use wheelchair totally). Has anyone had NMO diagnoses of NMO for spine only? what meds are you taking and is it workingl thanks
kandyd

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Hi @darlarose @jknight @uniqu3 @aathins @lovelife100
There were 3 separate discussions about neuromyelitis optica (NMO) in various groups here on Connect. I have merged all your messages together in one discussion so that you can meet each other and continue your conversation here in the Brain & Nervous System group.

Welcome back LoveLife100, what a relief it must be that your daughter has not had a relapse for a year now. What infusions does she take?

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@aathins

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

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Probiotics

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@kandyd

I went 4 years undaignosed – they now think it is NMO, however, there is not optical involvement only spine. Now having difficulty walkin (lately having to use wheelchair totally). Has anyone had NMO diagnoses of NMO for spine only? what meds are you taking and is it workingl thanks
kandyd

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I went from walking normally in mid April to being in a wheelchair first week of June to walking with a cane and rolling walker to now walking independently on my own. Physical therapy steroids gabapentin and rituximab

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@aathins

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

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I had an MRI and Spinal Tap. My walking is really bad, muscles are tight, burning pain in my back and stomach. Can’t do much because I get tire fast. The spasm are not bad now but my lower legs always feel cold. I was diagnosed in March. At that time I couldn’t walk at all. My right side was real weak. But with medication and physical therapy I am doing much better.

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