Monica’s Story


My story with NMO. Im 43 years old and was diagnosed with lupus about 12 years ago. I’ve since then have had half my thyroid removed and had ovarian failure when I was in my late 20’s. Overall I’ve managed lupus well which I take plaquenil and courses of steroids when I have flares. In February 2021 I got sick which now my neurologist thinks I may have had covid. Two weeks later I had a stroke which effected my left side with mild weakness. At the time I was hospitalized and told I had Antiphospholipid syndrome (APS) which is a disorder of the immune system that increases the chance to get blood clots. I recovered great and on May 8th 2021 I was at work and I could not read, write, or concentrate. I felt so tired.  When I woke up the next morning and felt out of sorts. I honestly thought I may be having another stroke. After I went to the hospital they discovered I had lesions on my brain. I was rushed to Barrows neurological institute in Phoenix Arizona. They did lots of blood test, MRIs, a spinal tap and a brain biopsy. I had inflammation on my brain and the lesions were getting worse. I lost the ability to speak, I had a right side facial drop and right side weakness. I could not walk with out help and lost all movement in my right arm. After a couple of weeks I was diagnosed with NMO with positive antibodies. I was felt so trapped in my body I wanted to ask so many questions but with limited speech I was frustrated and unable to. I was immediately started on heavy steroids given to me for 5 days intravenously and plasma freezes for 5 days as well. I started to recover regaining my mobility and speech (thank god) On the day before my release I also received a dose of Cytoxan. Since being home I’ve made improvements but I still have tingling through my right side. My right arm and hand still have a lot of weakness and become fatigued very easily. I’m in PT/OT, get acupuncture, massages, meditation take cbd daily and smoke marijuana at night to sleep and curve my anxiety. (It helps).  Im currently waiting insurance approval to start infusions of rhituxin or truxuma  and am a taper of steroids While I wait. I’m newly diagnosed with this disease and although it has me extremely concerned about my future with my children and grand daughters I know that I’m a strong girl and have faith that god has a plan for me. I always think what does not kill you only makes you stronger. I want to kick NMO in the butt and be happy and hope we find a cure!! :)) 

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