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 group.

Hi @ann123 good question about pushing through your normal activities. @faith1, what has been your experience with dealing with fatigue while being treated with Rituximab?

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I'd also like to tag @rapidgirl1 in this discussion about Devic's Disease / Neuromyelitis Optica (NMO). Welcome to the group. We look forward to getting to know you.

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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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Hello @nmo2016,

As John suggested, I moved your discussion and combined it with this existing discussion on Neuromyelitis Optica (NMO). I did this as we thought it would be beneficial for you to be introduced to other members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

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@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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@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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@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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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

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@julius

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

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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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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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@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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