It can only get better!

The story of Jamie

I was diagnosed with Non-Hodgkins Lymphoma at the age of 35. My condition was such that I didn’t need treatment, just monitoring. I was even healthy enough to have a second child. After my son’s birth, though, I was put on Rituximab for the lymphoma, once a week for four weeks.

Two years later, one night in September of 2017, I felt a dramatic pop under my ribs on the left side.  Soon afterwards, I noticed I was experiencing neck pain, and then frequent nausea and hiccups. The hiccups went on for hours at a time and often made me throw up.  I realized over time that I could stop the hiccups by vomiting, so at times I did so deliberately. These symptoms led me to the hospital three times, where they diagnosed gastritis and sent me home.  I followed up with a gastroenterology specialist who did an endoscopy, which showed nothing amiss.

In December, on my way home from work one day, I noticed that I was dragging my left leg. Over the next few days, the leg got worse and worse, until I was completely paralyzed.  It was then that I had the first of many MRIs. This scan showed multiple lesions, and a neurologist recommended I go straight to the emergency room. But since I had a trusted oncologist, I called him instead, and he direct admitted me to the hospital, where I stayed for three weeks.  

I was tested, poked and prodded, while being given five days of Solumedrol (IV steroids), five days of plasmapheresis and then five days of IVIG (intravenous immunoglobulin).  I remember being able to wiggle my toes on the third day of plasmapheresis, and I improved slowly during those days in the hospital, in-patient rehab and then out-patient rehab.

The fear was that my cancer had turned into a more virulent form of lymphoma.  One of the doctors in the New Jersey hospital where I was being treated recommended I go to Memorial Sloan Kettering in New York for a second opinion.  It was there that I was told I had NMO, not Intervascular Lymphoma.  

My cousins, some of whom are doctors, sent me immediately to see Dr. Michael Levy at Johns Hopkins, who explained my new condition, what to expect, and recommended treatments. Given the cancer though, I started back on Rituximab, but at a level for cancer – once a week for four weeks. This was in March.  The next treatment was to have been in September.  

Instead, in July, while planning a 40th birthday party for my husband, mourning the loss of my grandmother and celebrating the birth of my nephew, I drove my daughter to camp, and went in to sign some papers.  I couldn’t make my hand work. The feeling fluctuated between numbness, tingling and burning. My oncologist admitted me to the hospital again the next day, where I was given the five-day Solumedrol regimen and plasmapheresis over a two-week stay.

When I was diagnosed with cancer, I thought it would wreak havoc on mylife. But no – NMO – this rare and unknown disorder – has caused far more damage.  


*Find others with Neuromyelitis optica on RareConnect, the online platform for people affected by rare diseases