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. 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!

  3. AC-Canada on February 1, 2021 at 3:56 pm

    Hello NMO Community
    I was 48 years old in 2019 when I was diagnosed with NMO. I am from Western Africa and not predisposed to NMO as per the current study and statistics.
    I think this has started many years ago but I haven’t had the opportunity to get the proper tests, exams conducted.
    Back in 2014, I had a pinched nerve trouble – electric shock like sensation in the head, the shocks start in the middle back of my neck and spread through my head lapse a few seconds but feel like a deadly pain. I have completed a MRI of my back as this was followed by back and lombar pains. Nothing major came out from the result.
    In 2017, I had again a new pinched nerve episode, this time just behind my left ear starting point which spread to my head, this time it was severe and I was treated with morphine.
    I was also a big migrane person. I had carpe tunnel in my right hand and was constantly having tingling in my right leg which lapses a few seconds and prevents me from walking. Family Doctors (I have seen a few over the years) can’t explain what was going on, so I live with the pain.
    In mid July 2019, I started loosing vision in my right eye, ok I thought it was due to my daily exposure to the computer and it was an eye fatigue. On the beautiful day of Friday, July 19 2019, I was working from home sitting on the front porch of our house. I suddenly stopped seeing the houses, cars, trees… around me. My vision in my right eye was near zero, I refuse to go to the ER. The next day it’s gets worse but decided on Sunday, July 21 2019 to go to the nearest ER as I was then completely blind from the right eye. There the doctor told me my eye was fine and he sees nothing wrong except that the pressure in the eye was high so does my blood pressure. He referred me to the Eye Institute for an urgent consultation. There nobody knows what was really going on with the sudden vision lost. Because my blood pressure was way too high, they thought I had a mini stroke in my right eye wich probably damage my optic nerve and this can’t be reversed. I was sent to ER with a concern high level of blood pressure. I should have been admitted right away but I have waited for four hours and went to inquiry when I noticed my eye seeing the waiting room turning around me; I was having dizziness. A few minutes later I was put in a room and they rushed an intravenous medicine to stabilize my blood pressure I stay 3 days in the hospital and was put on blood pressure control pills. My vision was gone completely in my right eye.
    Starting mid October 2019, I started loosing vision in my left eye. There was a sharp pain in my eyelid, a lot of tension and pain in my left jaw, I wasn’t able to chew on that side at all. This time, I take no chance, I call my neuro ophthalmologist right the way to advise him of my other eye condition, he was only available to see in two weeks. I head there and he told me I was fine, he sees nothing wrong with my left eye. We were on October 30 2019. I was not convinced by his diagnosis but walk away very anxious. I was busing to home and when I get out from the hospital I could not see anything outside, yes it was a foggy late afternoon but I was convinced that something was wrong and I need answers because I can accept and afford to lose my sole eye. I walked back to the hospital to the ER and have been seen three hours later by an Intern doctor who told me it’s was allergies to just buy over the counter allergy med and I should be fine. I went home. On Monday November 4 2019, I woke up as usual and get ready for work. Walking to the bus stop, I was barely able to see the mail box within distance from my house, I continued walking to the bus stop, the bus was late that morning, I approached the timetable to see what time is the next one so I could walk up to the other street to catch another route but I was unable to read the timetable and to read the numbers of the other buses going by. I walk back home and ask my husband to drive me to ER, it was around 8am. I was seen at 1pm at the ER and given meds to treat the pain and send back home.
    Another disappointment! The next morning I was completely blind from both eyes. I went back to ER in the morning and have some blood work and CT scan done after a 5 hours wait. I was low in potassium and was given intravenous meds then I was send back to the Eye Institute around 8pm where I’ve seen an Intern Resident, he took the time to read through my chart, my husband told me that he can read on his face that he was disappointed by the way my situation was handled. He was very concerned about my condition and assure me that they would do they best to help me and find out what was going on. He proceeded with the routine check, he discovered something but told me he will be back as he needed to make a call. He reached out to my neuro ophthalmologist and told him about me his patient whom condition has worsen dramatically. They concluded to put me on steroids rigth the way and schedule me to see him first thing the next morning. I went home to my teens kids blind can’t see their face anymore.
    Wednesday, November 6 2019, I was back to the hospital, blood work, steroids intravenous, scheduled for a biopsy of both temple for the next day to see if my blood vessel to the eye were blocked as the vessels were not bringing blood to my left eye. Biopsy were negative. I have been seen by a rheumatologist and there was nothing to report. My neuro ophthalmologist send me to a colleague in another hospital for a second opinion and the latter suggested a plasmapherese, I have done 6 of them and recover partial vision in the left eye after the fourth one. Then I have completed other blood work and MRI to get the diagnosis of NMO. Since November 5th I was put on Prednisone 60mg per day for 8 months plus Azathioprine, blood pressure meds, vitamin K supplements, vitamin D for a total of 20 pills per day. Then comes the side effects I gain 20kg, developed diabesis increasing meds to 30 pills per day (Insulin, Invokana, Metformin). Swelling feets, tingling, electric shock on the left side of my body, water retention, uncontrolled blood pressure, difficulty walking, sitting, laying down on my left side…I was a pity. Me the energetic woman braving anything to achieve whatever goals I set. My kids were stunned to see me powerless and seeing NMO reshaping and controlling my body. I have lost all my hair. They have been brave, looking their mother sick with a non well knowned disease, plus the pandemic. It was just too much to deal with but they copped well. After 8 months on all those meds, I switched to Soliris on May 2020 start on a weekly basis for 4 weeks and now on a two weeks basis until May 2021. Infusion is going well so far, a lost of appetite, vision recovered in left eye at 60%; right eye maybe 10% or less as the eye is not sensitive to light and have exotropia. Still feeling tingling in my arms and legs, burning sensation in my left upper buttock and leg. Difficulty standing and walking for a long period. I keep a positive attitude and will fight and overcome NMO.

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