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.

2 Comments

  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.

  2. Sofia S on December 12, 2020 at 3:07 pm

    Hello. I wish you all the best in your recovery. I have also been recently diagnosed. I am 36 yrs old. My symptoms have 90-95% gone away and after taking corticosteroid therapy (i.v. and later oral), I have pretty much been given by my neurologist the choise between Rituxan and Oral Azathioprine. I was told that Rituxan has an 80-90% efficacy rate in terms of preventing relapses (whereas Azathioprine has about 50%) but I am very afraid of the side effects and the immunosuppresion associated with Rituxan especially now during this pandemic. What is your opinion on Rituxan? How have you been able to deal with the immunosuppresion/side effects and the threat of getting sick with covid? Thank you for your help!

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