Living with NMO

I am 65 years old and have now been living with this disease only 2 years but seems much longer. Before this came into my life I was active going to the gym 4 days a week living a happy life of an almost retired grandma with 2 active young grandchildren.

First symptoms of NMOSD

I first noticed the symptoms described like transverse myelitis. Tingly feet, legs and tightness in my abdominal area. Everything I was tested for, e.g. nerve response etc all came back normal. So I wondered then what could be causing this. No Dr. had any idea. I felt alone and sad still feeling all the sensations. It wasn't until it came to the day I could hardly move, I laid on the floor in pain. My daughter took me to the ER and watched me while I cried in pain feeling helpless.

An NMOSD diagnosis

I was admitted, thus my journey to a 2 week hospital and rehab stay. Mind you my physical status prior to this I believe helped me be in better control of my condition. Still not easy. I have had a spinal tap during my stay which resulted in my right foot dropping and my bowel situation turned awful and still. Is to this day. Fast forward I am doing Uplizna infusions every 6 months. As well prescription medications.

Physical activity now

I am physically active still at my gym. Doing fitness classes that I used to do but not up to the same level. I walk a lot and do some weights. My balance is not what is was but I work on it as much as possible. My personal life and my outlook towards life has changed. Keep your head up all of you who dealing with NMO. Keep doing what you can and know that my grandkids love you