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

@ann123

I got it this time. Thank you, it was very helpful.

Ann

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I’m so sorry your husband has this disease also it’s so hard to deal with I went to a Guithy Jackson convention in 2013 there was 200 of is there and Drs from diff places to answer our questions most of the people that has NMO are on pain Meds as Lyrica etc and steroids and that’s the Drs answers mostly is take Meds but that leaves me out I do take an infusion of Ritxuimab to kill the bad B cells so I won’t have a relaps. Does your husband do anything to keep him from relapsing? The conventions are every year the first time you go they pay for your room and Victoria Jackson always has great gluten free food for us . Her daughter came down with this disease when she was 14 and now she’s 19 I believe and on Meds but looks great. Victoria went to the Drs and said let’s find a cure so she very determined wonderful lady I met her she’s so very sweet . You can look up Guithy Jackson foundation and it has a fb also sorry I’m so windy just trying to share cause her and her husband has donated millions of dollars . I’m hoping we will all stand in prayer for a cure so we can have a life again . Take care and you can talk to me anytime .

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Anyone diagnosed with Neuromyelitis Optica

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@faith1

Anyone diagnosed with Neuromyelitis Optica

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Hello @faith1, and welcome back to Connect. I see that you joined in 2012 but have made your first post now, that is great. You may have noticed that I combined your discussion with an existing discussion on NMO. I did this so you could meet the other members who have this diagnosis and so you can read their experiences and share yours as well. If you are replying by email, you can click VIEW & REPLY to go to the new discussion and meet the other members discussing NMO.

@faith1, if you are comfortable sharing, have you been diagnosed with NMO? Do you have questions for the other members who may have some experience?

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Hi Justin, thank you for responding and connecting me to the other NMO responses. Yes, I have been living with NMO since 1/2011. I woke up with numbness on the right side of my body. It felt like I slept wrong and my body was asleep. What made me know something was wrong when I touched my neck and I couldn't feel the pinch I gave myself. I spent almost two weeks in Westchester Medical Center with no diagnose. They ended up sending my blood work to the Mayo Clinic where it was diagnosed NMO. I started taking Azathioprine which worked for a while but after having several flair's I researched other NMO specialists in the New York area and found one at Mt Sinai who introduced me to Rituximab Infusions with Solu-Medrol on 5/2016. I have not had another flair since. I still have numbness in my finger tips and feet but it has improved since switching medication. I do have spasms in mainly my legs and feet but they pass quickly and Baclofin helps but can make you drowsy. I'm thankful for Rituximab because each time I had a flair they would cause new parallels.

Liked by julius

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@faith1

Hi Justin, thank you for responding and connecting me to the other NMO responses. Yes, I have been living with NMO since 1/2011. I woke up with numbness on the right side of my body. It felt like I slept wrong and my body was asleep. What made me know something was wrong when I touched my neck and I couldn't feel the pinch I gave myself. I spent almost two weeks in Westchester Medical Center with no diagnose. They ended up sending my blood work to the Mayo Clinic where it was diagnosed NMO. I started taking Azathioprine which worked for a while but after having several flair's I researched other NMO specialists in the New York area and found one at Mt Sinai who introduced me to Rituximab Infusions with Solu-Medrol on 5/2016. I have not had another flair since. I still have numbness in my finger tips and feet but it has improved since switching medication. I do have spasms in mainly my legs and feet but they pass quickly and Baclofin helps but can make you drowsy. I'm thankful for Rituximab because each time I had a flair they would cause new parallels.

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I have a question for anyone with experience with NMO. I was diagnosed six months ago and am being treated with Rituximab. I asked my Neurologist about returning to my former activity level and he said to go for it. I find that I get tired out faster and then the next day I have a bad day, more pain and fatigue. If I push though that, am I more likely to have a relapse than if I take it easy?

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This won’t never let me send a message to anyone with this demanding disease like myself so tell me why Thanku Jenny

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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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@genevieve

This won’t never let me send a message to anyone with this demanding disease like myself so tell me why Thanku Jenny

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Hi @genevieve you posted that you can't send a message. I see your message here in the NMO group. It looks like it is working for you.

If you continue to have issues posting a message, please send me a message using this form and I'll get it sorted out. https://connect.mayoclinic.org/contact-a-community-moderator/

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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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