Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
I have never been a person that likes to sit still; I don’t even like going to the movies. If it was up to me, I would run from location to location so that I can get there faster. I was a runner in high school, in college and I have completed 4 marathons, qualifying for 2 Boston Marathons.
My story has many warning signs that I ignored because I didn’t have time or the energy to see a doctor right away. In June of 2014, I returned back to work from maternity leave. My daughter was 4 months old and she was not sleeping through the night. I was exhausted beyond measure.
I woke one morning for a 3am feeding and I stubbed my toe on our bedroom door. (Every sign after that morning, I chalked up to a stubbing my toe.) Later that same week, I ruined a new pair of peep-toe shoes, when my left leg dragged on cobblestones in Faneuil Hall. That same day, I got up from my desk and it was as if my entire left leg was asleep. Another missed sign…I was folding the baby carriage against my leg and I couldn’t feel my leg. So I switched legs, folded up the carriage and carried on. The 4th of July rolled around and after standing at a family party all day, I told my husband that my legs felt as though I had run a marathon. That following Monday, when I was getting home from work, my husband happened to be standing outside the door. He watched me climb the stairs and he noticed that I was dragging my left leg. He also noticed that my abdomen was swollen. Thankfully, knowing that I wouldn’t do it, he called my primary care and set up an appointment for the following day.
At my primary care appointment on that summer Tuesday in July, my doctor was perplexed. I could lift my left leg but when she asked me to hold it there, it would drop. She called a local neurologist and got me an appointment for that Thursday, 2 days later. I carried on with my 3 am feedings and work. The next two days, my leg got notably worse, almost paralyzed. I tried hiding the fact that my left leg was now dragging significantly. It would give out if I tried to put pressure on it. My mother decided that it would be a good idea to attend my neurologist appointment since my husband was traveling for work. I didn’t think it was necessary but she insisted. Honestly, I didn’t want her to see that I was dragging my leg and lifting it up to get it in the car.
At the neurologist appointment, I opted for a wheel chair…unimaginable! My mother wheeled me to the 8th floor. When the neurologist came to get me, I “walked” to her. She beckoned another doctor (Dr. L) to watch me walk and they nodded in agreement before the exam even began. At that moment, I can’t lie, I finally got nervous. She did a standard exam where she stuck a pin in my legs at different locations to determine if I could feel anything. Lying on the table, I couldn’t see where she was going to place the pin next and I didn’t feel a thing either. I could however, read the look of horror on my mother’s face.
The doctor finished up her exam and sat us at her desk. She pulled out the plastic spine and proceeded to tell me that I had an issue in my spine, not the outside. (I was thinking, maybe a bulging disk from lugging the baby carrier.) She told me that it was serious and that I needed a steroid treatment immediately and I would more than likely need to be hospitalized. The room began to spin and I started to cry. I had a 4 MONTH OLD at home waiting for me and I was still nursing for goodness sake! The doctor she beckoned at the beginning of the appointment (Dr. L), happened to be the doctor who headed up the MS center at that hospital. In a few short moments, I would be under her care.
Immediately Dr. L ordered an MRI and scheduled me to come in for a steroid treatment the next day. I called my husband to fill him in on the appointment and that I would be staying late for an MRI. I couldn’t believe what came out of my mouth,
He met us at the hospital for the MRI with our 4 month old. It was unimaginable. The next day was a classic summer Friday in New England; it was beautiful. Most New Englanders take Friday’s off and head to the beach, anywhere besides the office. Dr. L came in on that summer Friday to meet with my husband and I to review the MRI results. What she saw was a long lesion on my spine and explained that the lesion was causing the paralysis in my left leg – I needed care immediately. She could read the confusion on our faces and assured us that we were in the right hands. She put me on steroids for the entire weekend and told me that if things did not improve by Monday, she would admit me.
That weekend was the worst summer weekend of my life. I was stuck with IV after IV and I spent hours in the hospital each day. My sleepless nights went from caring for my newborn to agonizing pain. I felt as though someone was trying to break my back. I spent much of my sleepless nights in “child’s pose”. The weekend went by without an ounce of improvement. I saw Dr. L again on Monday and she told me to go home, pack, say good-bye to my daughter and return to the hospital. She admitted me for 9 nights in the hospital.
Each day in the hospital, I alternated between Plasma exchange and steroid treatments. In three long days, I could start to move my toes. That was a huge improvement. Miraculously, by the end of my stay, I could walk again. I was lucky, things went back to normal. I was able to return to my life as if it was just a bad dream. At that time, I was diagnosed with Transverse Myelitis (TM). I was told that only time will tell if it really was TM or something more serious like NMO.
4 short weeks later, I found myself in the exact same location, a paralyzed left leg. This time though, Dr. L didn’t waste a moment. She admitted me right away and proceeded with Plasma exchange again. My nightmare continued. The stay was a bit shorter the second time around and once again, I was fortunate enough to make a full recovery.
Although I never tested positive for the NMO antibody, my final diagnosis was NMO given the clinical findings. The long lesion on my spine and the 2 attacks led Dr. L to the diagnosis of NMO. I was put on Rituxan and scheduled infusions every 6 months.
I am lucky to have regained 99.9% of my leg strength back. I have not tackled a marathon yet but I have given birth to another child after being diagnosed with NMO. I am blessed to not have had any setbacks since 2014. Each day that I put one foot in front of the other, is a reminder of how precious life is and how much we tend to take things for granted.
Published on February 14, 2017