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Matt’s NMO Story – Driven for His Daughter

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

With respect to the patient’s desire to remain anonymous, we will refer to him as Matt. 

It started along with a very bad cold in late 2011.  Eye pain and some vision loss.  Matt went to an ophthalmologist and felt scared, for the first time, watching the concern suddenly grow in the doctor’s eyes as she tested him.  She scheduled an MRI and further tests with a neuro-ophthalmologist at Massachusetts Eye and Ear Infirmary.  After those tests, his other eye began to hurt.  When Matt awoke early the next morning, he looked at his phone to check the time and saw only a faint blur.  That was the second time he felt scared.

The neuro-ophthalmologist sent Matt directly to the Emergency Room at the Massachusetts General Hospital.  By that point, his cold had worsened, and he presented with fevers and other symptoms.  The doctors took 33 vials of blood in efforts to determine what was wrong.  He was almost blind.  When one doctor said they would try to stop whatever was taking his eyesight, and they would hopefully reverse it, Matt got scared for the third time since this started.

He wanted to be able to watch his daughter grow up.

Matt was put on a methylprednisolone drip, and his eyesight slowly improved day by day.  During this stay in the hospital, one morning at 2 am, he was given a spinal tap which later verified that he tested positive for NMO.  He was then given rituximab, and between that and the steroid infusions, he got better.

Matt is grateful that the experts at these venerable Massachusetts institutions were able to diagnose his rare disease within two weeks of onset;  they put him on medications that worked.  And then, five years and a day after his first NMO episode, Matt felt pain in one eye.  When he watched his hand move, he saw only a smear.

His neurologist had him go directly to the emergency room, and then they checked him into the hospital as his flares continued.  His vision was awry when the flares were occurring – he could see some things and not others.  Edges disappeared.  The vertical lines in letters were gone.  After each flare, both brightness and color dimmed further. He was again given intravenous steroids and an earlier drip of rituximab than normal after which, his vision returned completely.

NMO changed Matt’s outlook on life.  He tries to live each day to the fullest and enjoy the time he is given.  He and his family travel and experience life as much as possible, and he is not one to sweat the small stuff.  Not anymore at least.  He knows that any day, NMO could take his vision and his ability to walk therefore, Matt tries to make everything count.  And the best thing?  He has watched his daughter grow up.

This post was written by Gabriela Romanow, Chief Community Relations Officer, in April 2017

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