My story starts in April, 2009. One day while I was on a class trip to Washington, DC I woke up with a very bad headache and blurred vision. When I got home, I went to the ophthalmologist, who sent me directly to the emergency room because my optic discs where very swollen. I spent the next five days in the hospital getting IV steroids. At the time they thought I had viral meningitis. We now know that was my first episode of NMO.
Fast forward to February 24, 2012. I woke up at a friends house with a sharp pain behind my eyes; almost as if rocks had been placed there overnight. I blamed this on the fact my friend and I had not gotten a lot of sleep. The next morning, I woke up and the vision in both of my eyes was blurred. I went to the ophthalmologist, who said it was just a migraine, and to take migraine medication. The following morning was Sunday, February 26. I woke up, crying, at 4:00am because the pain had gotten so bad and my vision had decreased more. My parents took me to the Beaumont ER, were they started me on an IV drip of strong pain medication and fluids. At this time, the neurologist I saw back in 2009 called for MRI’s of my brain, orbits (eyes), and C-spine. They also took a lot of blood to start running tests. The MRI’s of my brain and C-spine came back normal, but the MRI of the orbits came back showing swelling of the optic nerves; giving a diagnosis of Optic Neuritis. Optic Neuritis has to be triggered by something, so the doctors did a spinal tap. Usually, they put patients to sleep before they do this to prevent injury to the patient, but this time they gave a medication to make me relax… Only this made me VERY agitated, and I kicked one doctor while bitting another one. OOPS! After this, they admitted me as inpatient, where I stayed for 5 days; getting IV steroids and pain meds. After the 5 days in the PEDS unit, I went home and was put on a 10 day steroid taper to reduce the swelling. The doctors said my vision would come back in time. But it seemed as if my vision was declining everyday.
Friday, March 16: I started running a fever out of nowhere, and went to bed early
Saturday, March 17: Woke up with a fever of 104 and totally blind in my right eye
Sunday, March 18: Didn’t get to go to Friendship Circle because I was still running a fever of 103. The vision in my left eye became even more blurry
Monday, March 19-Friday March 23: Went to see the ophthalmologist, who confirmed my vision had changed and ordered another MRI. The whole week was devoted to doctors and tests. Towards the end of the week, I started developing tremors after running another fever.
Sunday, March 25: Went to Friendship Circle feeling fine, but once the program ended and I was picked up, I became lethargic and had trouble walking. It felt as if I had someone smash my bones with a hammer repetitively.
Monday, March 26: Went to U of M to get a second opinion. He ordered another spinal tap, more MRI’s, and more extensive blood work. We were supposed to go right to Mott’s Children’s Hospital, but they didn’t have any beds available.
Tuesday, March 27: Woke up and lost bladder function. I was sent directly to Mott’s ER, where they placed a catheter and started running tests. At 2am they removed the catheter, and told us to go to Beaumont if I still couldn’t pee in the morning.
Wednesday, March 28-Wednesday April 11: I spent 14 days on the PEDS floor at Beaumont. The doctors were not really sure of what was wrong with me. They thought it might be NMO and treated me accordingly. My days were filled with physical and occupational therapy, visitors, and plasmapheresis, which takes blood out and cleans it of the antibodies. I was discharged and went straight to the airport to travel to the Mayo Clinic in Rochester, Minnesota.
Fast forward a few months, my vision has returned from 2/400 and blind to 20/20 and 20/30. I am having a great time at summer camp, and living a 15 year olds’ dream.
