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

@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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Hi Kandyd. I was diagnosed in March. At that time I couldn’t walk. I stayed in hospital over a month. Had Plasma Exchanges and steroid IV. Also physical therapy. I am taking azathioprine to stop future attacks. Gabapentine and Baclofen for nerve pain. I went from wheelchair to a walker and now I can walk without an aid. Not perfect and I do get tire really fast, so I still use an aid if I’m going out. Praying that you will also be able to get out the wheelchair.

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My son has NMO and is constantly struggling with the pain causing substance abuse issues. We are looking for someone to help him in the Atlanta area with his depression, substance issues and the constant upheaval that comes with dealing with the disease. Any advice would be appreciated

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Thank you, @johnbishop.

Hello @macdapat,

You may notice that I moved your discussion and combined it with this existing discussion on NMO. As John suggested, we thought it would be beneficial for you to be introduced to the many members who have discussed much of what your son is experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and also meet some of our other members talking about their or their loved ones’ experiences.

While we wait for other members to join in, here is some information about Neuromyelitis optica care at Mayo Clinic, that you may wish to view:
https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/care-at-mayo-clinic/mac-20375661

@macdapat, we look forward to getting to know you and your son; when was he diagnosed with NMO? How has he been managing it thus far?

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Peace Blessings and joy to you @macdapat, I am the mother of a young active 21-year-old daughter who is what I would say is a survivor of NMO. She has lived with for about 4 years now it has been hell the first 2 years. What we did was go organic as much as possible soap, dish detergent, food, pure fide water, well that was not enough the crying spell mood swing was out of control. Love +Prayer is key !!!!! understanding listening to your son body!!, keep a journal of everything goes back and read it on the regular. Don’t let doctors tell you about your son they don’t know him you do, listen to your son’s want, needs, and feels. If he tells u the med’s make him feel a type of way believes him please my daughters felt. It is ok to change meds to fit him as a person. My daughter still has issues but we not on pills we only go to IVIG every 3-6 months. She is so blessed that she takes care of an active two-year-old almost every day for a living. Please pray pray pray believe listen to your son fight for him.

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@lovelife100

Peace Blessings and joy to you @macdapat, I am the mother of a young active 21-year-old daughter who is what I would say is a survivor of NMO. She has lived with for about 4 years now it has been hell the first 2 years. What we did was go organic as much as possible soap, dish detergent, food, pure fide water, well that was not enough the crying spell mood swing was out of control. Love +Prayer is key !!!!! understanding listening to your son body!!, keep a journal of everything goes back and read it on the regular. Don’t let doctors tell you about your son they don’t know him you do, listen to your son’s want, needs, and feels. If he tells u the med’s make him feel a type of way believes him please my daughters felt. It is ok to change meds to fit him as a person. My daughter still has issues but we not on pills we only go to IVIG every 3-6 months. She is so blessed that she takes care of an active two-year-old almost every day for a living. Please pray pray pray believe listen to your son fight for him.

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@lovelife100

Thanks for your encouraging and hopeful words!

I like the idea of keeping a journal to report findings, has that been helpful?

Teresa

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I have Devic's disease. I have a lot of burning pain and sore stiff joints. Also my right leg jumps a lot. Anyone else experience these symptoms. Any suggestions for some relief.

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Hello @aathins,

You may notice that I moved your discussion and combined it with this existing discussion on Devic's disease or Neuromyelitis Optica (NMO). I did this as I thought it would be beneficial for you to be introduced to other members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones' experiences.

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@kanaazpereira

Hello @aathins,

You may notice that I moved your discussion and combined it with this existing discussion on Devic's disease or Neuromyelitis Optica (NMO). I did this as I thought it would be beneficial for you to be introduced to other members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones' experiences.

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Ok. Thanks

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I would like to set up a support group here in Madison wi

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I was diagnosed with NMO six months ago, and am having trouble understanding what is going on with my body and how exactly to help myself. When I have a flare up, how should I respond to it? Any ideas?

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@ann123

I was diagnosed with NMO six months ago, and am having trouble understanding what is going on with my body and how exactly to help myself. When I have a flare up, how should I respond to it? Any ideas?

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Hello @ann123, welcome to Connect. I don't have NMO but do have several other autoimmune diseases. I'm tagging other members in this discussion in hopes that they can offer some suggestions or ideas to help you. @oregongirl and @aathins can you offer any suggestions or infomation/tips for @ann123?

Ann the following is a link to a post earlier in the discussion that may also offer some helpful information:
https://connect.mayoclinic.org/comment/91765/bookmark/?ajax_hook=action&_wpnonce=76ef07e468

John

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@ann123

I was diagnosed with NMO six months ago, and am having trouble understanding what is going on with my body and how exactly to help myself. When I have a flare up, how should I respond to it? Any ideas?

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Hello,
Thanks for responding to my message and tagging others with the disease. I tried to use the link that you posted, but I got a ‘page not found’ message. Could you try posting it again? Thanks!
Ann

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@ann123

I was diagnosed with NMO six months ago, and am having trouble understanding what is going on with my body and how exactly to help myself. When I have a flare up, how should I respond to it? Any ideas?

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Hi Ann @ann123 – I just clicked on the link and it takes my up to the earlier post? I will post it again to see if this works for you:

https://connect.mayoclinic.org/comment/91765/bookmark/?ajax_hook=action&_wpnonce=264dce940b

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Hi I read the story about her husband woke up paralyzed in his legs and no use of his bladder and bowels the same happened to me in2010 First it was one leg then the other but the Hosp where I worked at had no idea what to do for me it was sure scary . I was sent by ambulance finally on the second day after me and my husband made it work that way to Stanford Hosp in Ca and right away in the ER I was diagnosed with NMO by then myI was paralyzed up Thru all of my ribs and couldn’t move only my right arm a lil and my head . I was in the hosp they treats me with plasma freazes 5 x I had 3 wks of rehab but I can’t take pain Meds are steroids my body is in chronic pain but the Meds makes me worse. I’ve tried so many Meds and infusions and a stimulater but nothing works and it’s been 8 yrs I’m still in a wheel chair I can take a few steps and stand but I’m bent over my spine is curved it never was before I’m still miserable but I keep pushing and do things until my pain gets to bad then I lay down and nap I now have a swelledfoot red and burning I have to ice pack it day and night there’s no Drs that know what to do I put myself on a no sugar no salt no white flour lots of veggies and meats only use stevia etc to help the inflammation that causes pain so far it hasn’t helped after 5 yrs but sick for 8 I still pray and keep my faith . I’m praying for a cure to help all of us

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

Ann

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