Symptoms

I hope others will share their own experiences. In the meantime, I thought this article may resonate with you https://neuromyelitis-optica.net/living/getting-a-wheelchair. Best wishes, Julie (team member)

Hey there
I experiences complete paraplegia and have been confined to a wheelchair permanently. I was told I'm more than likely to never wall again

I feel that's where im headed. My legs get weaker and weaker all the time. It's very difficult to walk very far. The doctor ordered me a walker but I dont think that is gonna help much. I feel like my legs can't carry my body.

My first major symptom after years of fatigue and dizziness, was the loss of use and sensation in both legs, and six months in a wheelchair. That was 25 years ago. For me the path has been walking nearly normally, then using a cane, now a walker. I've had three steroid infusions a month for more than a dozen years. Now that isn't working, I have tried several medications (from Rituxan to newer meds) and am approved for one of the newest (Ultomiris) starting around July 4th. My scariest moment was standing with my therapist at the top of a staircase with no sensation from mid ribcage to my toes and taking that first step down! But I rebuilt muscles and walked nearly all of those years. Blurred vision when I'm tired or hot, MS hugs and all those other strange symptoms come and go or come and stay. I am excitedly frightened for July, wondering if I will really get help or how I will deal with the disappointment. With NMO that question is with me a lot, but my experiences, learning and life have definitely been worth it all.

Marlene Harris Austin