Better late than never

Joane G

It all started around October 2013 I had a bad case of hiccups and vomiting I was admitted to the hospital because I could not eat or keep fluids down . This lasted for about 15 days and resolved on it’s on then every year after that I puke have these same symptoms.

Doctors at Weill  Cornell Presbyterian hospital were not sure what was causing these symptoms so they ran some test and noticed I had a hernia. They repaired it 3 times, the last repair was December of 2018. The survived did not help do st this point they sent a psychologist down to my room to tell me that I was hallucinating these symptoms and making my body hiccup.

So desperate and eager to find answers I turned to the internet where I found an article about Devic’s disease and asked to be screened for it but the doctors insisted that the disease was so rare they doubt I had it. I went home after the last hernia repair and the hiccups resolved after about 6 days so got a total of about 14 days.

It’s now September 2019 I started having severe pain behind my right eyes it lasted for about 7 day and they I started losing my vision do I went to NYU Lutheran hospital they did an mri of the brain and orbits and diagnosed me with Nmo they ran lots of test and I was given steroids for 4 days then discharged. The pain was still there but went from a 10 to a 6 . The doctors at NYU sent me back to Presbyterian because they could not treat me as an outpatient due to my insurance . I saw a neuro  ophthalmologist that told me to go to the ER where I was admitted and given a 5 day treatment called plasma pheresis  which helped with the pain a lot however I can barely see out if my right eye just shadows . I was given my first dose of Rituxan on December 26 2018. I will receive another dose in 2 weeks then 6 months after .

I am 31 and a mother of 3 little boys. My youngest son has autism so dealing with this diagnosis has been a challenge but I am hopeful for the future.

1 Comment

  1. Ruth Snow on March 2, 2020 at 6:40 am

    My name is Ruth Snow, age 69. I was diagnosed with NMO..Devics, March of 2015.
    I am looking to connect with others with this disease. Also to learn of any new treatments or trials available.
    I feel so alone in this Disease. I see two Neurologist who treat MS but do not know Devics.
    I pray for someone who knows of my Disease to treat me.

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