Looking for info and people with Neuromyelitis Optica (NMO)

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 .

Anyone diagnosed with Neuromyelitis Optica

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?

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.

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?

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

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?

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.

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?

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.