Looking for info and people with Neuromyelitis Optica (NMO)

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.

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.

Ok. Thanks

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

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?

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

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

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

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

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

Ann