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What was your first symptom?

What was your first symptom of NMO?

  1. for me, first symptom was extreme nausea, vomiting, and hiccuping that lasted for months. That’s how my first episode appeared. Then a couple years later, the same thing along with vision problems.

    1. Hi @gabygee - thank you for sharing - that must have been a tough few months. How long did it take for you to get an NMO diagnosis? Best, Alexis (team member).

  2. I had my first episode 2 years ago but I did not know I had it. Then I was hospitalized this year In February. I was in the hospital for a week and was told I most likely had NMO but I needed to wait for my spinal tap results to confirm. My results came in about 2 weeks later and confirmed it. x Gaby

    1. That must have been so scary for you to have attacks and not know what it was or get treatment!

  3. Two years ago my first symptom was tingling. My foot started tingling as if going to sleep but it didn't feel like that. It went away in a day or maybe two so I thought nothing of it. A few months later it came back in both feet but didn't last long so I blew it off. But in a few more months I began losing feeling in my feet as well as my right hand, lost ten pounds yet had a bloated stomach plus I was having bowel issues. My doctor at the VA was clueless, had me get a colonoscopy. By then I had such horrible skin sensitivity that I couldn't stand clothing touching my stomach. My daughter recommended a tight binder which helped and didn't.

    Some weeks later when I nearly ran a red light because I couldn't feel my foot on the brake I was able to turn into a store driveway so immediately went back to the doctor. She was still clueless but my blood pressure was so incredibly high that she sent me down the hall to the emergency room. After a day and night of testing, MRI, Pet scan, X-ray and spinal fluid thingy, they finally told me I had NMO and that they'd start me on steroid infusions as an outpatient. So despite my doctor's cluelessness over several months, she did get me to the ER where they amazingly diagnosed me within 24 hours. I'm always thankful for the VA!

    Now my last symptom was not being able to walk at all. After a few infusions I fell in the bathroom. My current nurse found me - he knows how far I've come since then. He got me squared away and I was admitted that day. They decided to stop my steroid regime and give it to me in pill form so they could send me to a local hospital just down the street for plex and after that to another VA hospital four hours away for rehab. Now I can walk and my balance is a lot better but I still have an odd tingling kind of feeling in both feet and hands, the right hand's nearly useless though, and of course some other small symptoms.

    1. Thank you very much. I appreciate your encouragement and hope you're doing as well as me now!

    2. Wow, that nurse is probably very close to your heart. The nurses that see the transformation always have the best and biggest impact on us. Good to hear you have good treatment now!

  4. The VA was great indeed! Minor symptoms are vibrating spine, weird feeling in legs which feel thick, slight balance issues every once in a while which my vibration plate has really helped improve, MS band/hug which has lessened considerably, shoulder/neck/upper arm pain sometimes, burning/sensitive upper arm sometimes, and tingly hands and feet. All pretty minor and easily remedied if ignoring it doesn't work. I take Soliris and vitamins and supplements and exercise which I feel have all helped me a lot. I still can't use my right hand well but I feel incredibly blessed that I don't have serious after effects aside from that after the attack.

    1. @DarlinDD I think a lot of us with NMO can relate to the things you mention, I know I can. I had the MS hug really badly at first but it lessened within the first year. It's a really good warning sign for me that I'm overheated or pushing myself too much - it comes back with a vengeance! It sounds like you have a really good handle on all of those extra symptoms but remember, this community is here to help you whenever you need it (Helen - team member)

    2. Thank you!

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