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.

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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@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.

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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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