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My NMO Diagnosis Has Changed My Life

My life changed in November 2022, when I consulted for numbness of the right upper limp. After a series of Tests, I was told I had transverse myelitis and further tests revealed it was NMO. The numbness progressed to the lower limbs such that I am limping. I received high doses of steroids and Rituximab. Currently I am on Lioresal for spasms and Imurel an immunosuppressant. Since my diagnosis, my life has never been the same. Does anyone else feel the same?

  1. Yes, I was diagnosed in 2020 at the age of 43, a few years into getting married. Life was going well. I started feeling tingling as well and then my left side started to get tingling and fast and furiously, lost function of my lost side & was in terrible pain. My husband helped me with daily things like washing my hair and getting dressed. A few days after I couldn’t take the pain and not knowing what alien had taken over my body, we checked into the hospital. Little did I know we’d be there for a little over 2 weeks and walk out with a life altering diagnosis. My team had an idea pretty quickly what I had, after MRI’s that confirmed their suspicions, they let my husband and I know the situation. I had five treatments of plasmapheresis, learned how to walk again, and gained back a good amount of use of my left side. I am mostly back to normal but have chronic tingling and pain, have some adjustments in my lifestyle, and can’t go, go, go like I used to due to getting fatigued quicker now. I’ve been on Rituxan since March 2020 and no relapses since. So yes, I know the life we once had as to the one we have now with NMO. Keep keeping on!

    1. Hi there, thank you so much for coming to the community. This sounds like such a frustrating thing to navigate. I found this article that might be helpful: https://neuromyelitis-optica.net/living/cope-with-diagnosis
      Please know we are here for you and wishing you all the best 💚 Kailah (NMO Team Member)

    2. as I was reading your note you said you had 5 treatments of Plasmapheresis. I just completed mine 4 days ago but I don’t feel any improvement. I still have the painful spasms and weakness on my legs. My doctor said it will take about a week or two to see the improvements. I would like to ask you based on your experience. How long until you felt the improvement after your plasmapheresis? Any suggestions you can give me?

  2. Hi I was diagnosed in 2022. I also was told I had transverse myelitis and was told I was healthy and it would improve within three months. I went on to have more attacks and then found out it was NMO. I had plasma treatments and steroids. I went from hospitals to a rehab for five weeks to learn how to walk again. I came home using a wheel chair and walker. I continued with pt in home and as outpatient. I can walk now drive, ride my bike and garden. I continue to have numbness in both legs and feet. My left leg is the worse of the two. Sometimes they are very tight like someone is grabbing both my ankles and holding them tight. I have the MS hugs throughout the day and I have nerve pain on the left side of my torso. At night, I have the spasms. I take gabapentin and baclofin. I also take acetaminophen. I also take senna on a regular basis. I have started the rituxin and will be getting my third infusion in November(every six months). Things have definitely changed for me. The fatigue factor is very frustrating as well as the limitations with the numbness. I am lucky

    1. my ankles and legs feel really tight too…

  3. thanks so much for sharing with the community. I found a few articles on site related to what you have shared that you might find to be helpful. We understand how frustrating it can be to navigate through life with NMO and the symptoms that accompany the diagnosis. Please know that as a community we are here for you!
    https://neuromyelitis-optica.net/clinical/ms-hug
    https://neuromyelitis-optica.net/living/nmosd-spasms
    https://neuromyelitis-optica.net/living/nmo-spasms
    https://neuromyelitis-optica.net/answers/coping-pain

    Keep well, Kailah (NMO Team Member)

    1. I'm a 65 year old male . I never had any serious health issues and was enjoying my retirement, that all changed on September 12 2023.When I woke up the following day I was feeling a burning and tightness around my midsection. Thinking it might be shingles, but my wife who experienced them said it only effects one side . Over the next two days I began feeling tingling and numbness in my lower extremities from my waist down .Knowing this was not normal I went to the ER and was admitted to the hospital. After blood work and MRI of my thoracic and lumbar area of my spine, I was told I had transverse myelitis. This was followed by a spinal puncture and 5 days in the hospital receiving methylprednisolone interveinously .I was sent home with minimal feeling mostly on my right side. But after a few days at home I began getting headaches and I never experienced headaches my whole life. I called my neurologist and was told this could be from the spinal puncture and go to ER . After being admitted, I was given another MRI this time of head and the cervical area of my spine and sent home with oral steroids for 15 days . When all blood work, spinal puncture and MRI results came in I was diagnosed with NMO on October 18 2023. I'll be receiving infusions of UpLinza within the next few weeks hoping this will help me from getting further recurrences.
      I presently have most of the feeling on my right side, but still have numbness and tingling on my leftside but seems to be feeling a little better each day. I began exercising again by walking on my treadmill and doing light weights to keep my body strong. I began driving this week and hoping to regain enough feeling to return to the things I enjoy doing in life.
      I wish everyone best wishes in your journey and stay strong .



      1. Hi, I’m so glad you’ve all received treatment and have experienced remarkable improvement. My first attack was in 1979 at age 14. I was misdiagnosed with MS until 2018 and never received any effective treatment. As a result since the early 1980s I’ve been paralyzed on the left side and legal blind. But life goes on, and you only have one so you have to just go for it. Your diagnosis, or misdiagnosis, doesn’t define you, but how you respond to it may. I was young then, so I still had to have lots of fun, get an education, get a career and start a family. I found over the years that what you can’t do because of this disease and any associated disabilities you may experience is less important than what you can do. No, life isn’t the same as what it was or what it was going to be but it’s still life, and it’s your life. So make it happen and make it matter, and have fun. Don’t worry about failing or falling from time to time, it happens. If I don’t fall l or fall every once in a while I take it as a sign I’m just not trying hard enough. But be careful too, I tripped in June 2023, fell on my paralyzed arm (sat on it actually, if you can imagine that) and broke both the radius and the ulna bones. Try not to do that but do try to have fun. I tripped that day at a restaurant after taking my young son to a Jurassic World Exhibition. He had a lot of fun so it was a good day overall.

      2. Hi, i’m so sorry that you had to go through all this. How are you feeling now?

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