1. < Brain & Nervous System

Looking for info and people with Neuromyelitis Optica (NMO)

Posted by Tonia @tonia, Mar 4, 2012

Hi I came here looking for the same kind of info about chronic pain with Devic's Disease / Neuromyelitis Optica (NMO) . 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

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Aug 7, 2018
In reply to @nmo2016 "Hello, I have been diagnosed with NMO and I have really bad nerve pain around my..." + (show)
@nmo2016

Hello, I have been diagnosed with NMO and I have really bad nerve pain around my abdomen. It has my back in pain and my right side. I have tried several pain meds and nothing is giving me any relief. Does anyone have any suggestions?

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Hi @nmo2016 -- You might be interested in an earlier post in this discussion that has a Neuromyelitis Optica (NMO) Overview — Mayo Clinic – YouTube video and a Science Daily News article — Researchers stop neuromyelitis optica attacks with new therapy (Oct 09, 2012). Here is the link to the post:

-- https://connect.mayoclinic.org/discussion/hi-i-came-here-looking-for-the-same-kind-of-info-about/?pg=2#comment-92084

Are you doing OK now with the rehab at home and taking Imuran (Azathioprine)?

John

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julius | @julius | Sep 10, 2018
In reply to @kandyd "I went 4 years undaignosed - they now think it is NMO, however, there is not..." + (show)
@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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kanyd, my husband has Devic's Disease(NMO). He has 2 spinal lesions, one at the base of his neck, which makes it difficult and painful to use his hands. And one on his lower spinal cord, he is in a motorized wheelchair, he can't use his legs to stand on. He can only use them only to transfer on a transfer board to bed, car, shower,etc.He was diagnosed March 2016 with neck lesion diagnosed Dec. 2017 with lower back lesion. He is taking carbamazepine, prednizone, he does plasamaphersis every 6 weeks, and retuxin twice a year. But like you, his vision is not affected which makes me wonder bc his eye dr said his vision is perfect. Right now he is not getting worse but he's not getting better either. He says he feels like he might not be able to use his hands much longer. At first they thought he might have transverse myelitis. i wish you well. I'll update if he has any changes. Marie

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1 reply
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Teresa, Volunteer Mentor | @hopeful33250 | Sep 10, 2018
In reply to @julius "kanyd, my husband has Devic's Disease(NMO). He has 2 spinal lesions, one at the base of..." + (show)
@julius

kanyd, my husband has Devic's Disease(NMO). He has 2 spinal lesions, one at the base of his neck, which makes it difficult and painful to use his hands. And one on his lower spinal cord, he is in a motorized wheelchair, he can't use his legs to stand on. He can only use them only to transfer on a transfer board to bed, car, shower,etc.He was diagnosed March 2016 with neck lesion diagnosed Dec. 2017 with lower back lesion. He is taking carbamazepine, prednizone, he does plasamaphersis every 6 weeks, and retuxin twice a year. But like you, his vision is not affected which makes me wonder bc his eye dr said his vision is perfect. Right now he is not getting worse but he's not getting better either. He says he feels like he might not be able to use his hands much longer. At first they thought he might have transverse myelitis. i wish you well. I'll update if he has any changes. Marie

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@julius Hello Marie and welcome to Mayo Clinic Connect.

I am sorry to hear that your husband is dealing with so many issues. I can see how limiting this is to his daily activities. He is so fortunate that you are there and looking out for him and these health issues. It sounds like you have a lot of questions regarding his diagnosis and various symptoms.

Have you considered getting a second opinion from a multidisciplinary team like Mayo Clinic or a university medical center?

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julius | @julius | Sep 11, 2018

<p>I have been reading stories on this site and there was a gentleman who gave a website that showed a therapy for this disease. If anyone sees it could you please let me know, Thank you Marie</p>

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 11, 2018
In reply to @julius "I have been reading stories on this site and there was a gentleman who gave a..." + (show)
@julius

<p>I have been reading stories on this site and there was a gentleman who gave a website that showed a therapy for this disease. If anyone sees it could you please let me know, Thank you Marie</p>

Jump to this post

Hello Marie @julius -- I've found references to the post but the bookmark doesn't take me to the post I think you are talking about. Here are the links that I think are in the post.

Neuromyelitis Optica (NMO) Overview -- Mayo Clinic - YouTube


Researchers stop neuromyelitis optica attacks with new therapy (Oct 2012)
-- https://www.sciencedaily.com/releases/2012/10/121009092414.htm

John

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vicky1228 | @vicky1228 | Aug 21, 2020

My 24yr old son was recently diagnosed with NMO and I'm wanting to see what information is out there for the disease. Treatment and ect.. I have never heard of this before. He had a headache then lost his vision in one eye then blurry in the other had hospital stay for over a week with steroids they thought it was MS and now they did test and say its NMO. Any help would be greatly appreciated. Thank you

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1 reply
Amanda Burnett | @amandaa | Aug 21, 2020
In reply to @vicky1228 "My 24yr old son was recently diagnosed with NMO and I'm wanting to see what information..." + (show)
@vicky1228

My 24yr old son was recently diagnosed with NMO and I'm wanting to see what information is out there for the disease. Treatment and ect.. I have never heard of this before. He had a headache then lost his vision in one eye then blurry in the other had hospital stay for over a week with steroids they thought it was MS and now they did test and say its NMO. Any help would be greatly appreciated. Thank you

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Hi @vicky1228, welcome to Mayo Clinic Connect. I am sorry to hear about your son's diagnosis.
Nerve Pain - https://connect.mayoclinic.org/discussion/nerve-pain-1/
Did your son's physician offer any helpful information? How does he feel about the diagnosis?

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shaunamortennmo | @shaunamortennmo | Nov 22, 2022
In reply to @luckypaubla1213 "I truly hope they do, it scares me to horror to believe that these pains would..." + (show)
@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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Hello Paula,

My name is Shauna. I have tonic spasms and very uncomfortable and painful vibration inside. These symptoms are worst with stress, vibration, and loud noise. I just moved into an apartment and the heating system and motor is in the floor in the entire unit so it’s constantly vibrating and the vibration goes right through my bed so much, I had to leave the apartment and now staying with parents. The apartment is fighting me on this telling me this is normal when it’s not. Anyhow, my point is wanting to ask you what you have encountered with NMO regarding your symptoms. I’m trying to get enough people similar to me so that I can somehow build a case because this art meant doesn’t want to pay for anything I’ve already invested including an expensive move. Please, if you would t mind sharing with me your symptoms, maybe we could help one another. I hope to hear from you.

Shauna

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 22, 2022
In reply to @shaunamortennmo "Hello Paula, My name is Shauna. I have tonic spasms and very uncomfortable and painful vibration..." + (show)
@shaunamortennmo

Hello Paula,

My name is Shauna. I have tonic spasms and very uncomfortable and painful vibration inside. These symptoms are worst with stress, vibration, and loud noise. I just moved into an apartment and the heating system and motor is in the floor in the entire unit so it’s constantly vibrating and the vibration goes right through my bed so much, I had to leave the apartment and now staying with parents. The apartment is fighting me on this telling me this is normal when it’s not. Anyhow, my point is wanting to ask you what you have encountered with NMO regarding your symptoms. I’m trying to get enough people similar to me so that I can somehow build a case because this art meant doesn’t want to pay for anything I’ve already invested including an expensive move. Please, if you would t mind sharing with me your symptoms, maybe we could help one another. I hope to hear from you.

Shauna

Jump to this post

Hello @shaunamortennmo, Welcome to Connect. I don't think that Paula @luckypaubla1213 is still following Connect as her last post was from 2018. There is a newer discussion on the topic that you might find helpful here:

-- Neuromyelitis optica: What helps?:
https://connect.mayoclinic.org/discussion/neuromyelitis-optica/

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