Patty’s NMO Story – Is It MS or Could It Be Something Else?

I was 33 years old in 1993, when I experienced a sudden attack of optic neuritis, an inflammation that damages the optic nerve causing vision loss. A small black dot, obstructing the vision in my left eye turned into complete blindness in that eye in a matter of days. While admitted to Upstate University Hospital in Syracuse, the neuro-ophthalmologist said the optic neuritis was caused by either a “transient neurological attack” that would most likely never occur again, or it was the first and early symptom of multiple sclerosis. My sight returned completely after a series of intravenous steroids, and over two decades passed without incident.

Twenty years later, in the summer of 2013, I was the picture of good health. One beautiful weekend in particular was spent swimming at a friend’s lake, taking long walks and working out at the gym. There was no indication that less than a week later I would be hospitalized and in a wheelchair with a completely paralyzed left leg and left foot, partially paralyzed left arm and hand, and only minimal feeling in various other parts of my body. The neurologist who examined me in the ER before the numbness had progressed to paralysis said my symptoms appeared to be “classic multiple sclerosis”. I could not believe what was happening and what I was hearing. I was truly absolutely terrified.

I remember a nurse, on my second or third day in the hospital, putting my sneakers on because I couldn’t feel my foot to do it myself, yet just a few days prior I had walked my regular four miles.

An MRI of the brain, however, did not show lesions consistent with multiple sclerosis, despite the similarity in the symptoms. A stroke was also ruled out. The spinal tap showed transverse myelitis, a neurological attack that left the entire width of my spinal cord inflamed, but it was explained to me that transverse myelitis is typically a symptom of something bigger.

Weeks in the hospital passed without a diagnosis, as one condition after another was ruled out, including Lyme disease and West Nile virus. While I prayed and waited for answers, I gradually regained much of my strength and mobility with high doses of intravenous steroids, intense inpatient physical therapy, and as much determination as I could muster.

Prior to my hospital discharge and after exhausting every other possible cause, my local neurologist told me about a very rare autoimmune disease called neuromyelitis optica (NMO), a severe and relapsing autoimmune disorder in which immune system cells attack the optic nerves and spinal cord, causing weakness, numbness, paralysis, blindness and pain. He thought it was unlikely that I had NMO as it was so rare, but needed to rule it out.

After seven weeks of being in the hospital and physical rehab, I was making great progress and had gone from a wheelchair to a walker to a cane, to finally walking without assistance (a slow, unsteady walk, but considering one doc told me I may never walk again, I was, and still am, just fine with it).

Three months after my initial attack, the results were in and I received the dreaded definitive diagnosis of NMO. I was told that in addition to MS being ruled out, the criteria for a diagnosis of NMO is having had two out of three: optic neuritis (losing my sight twenty years earlier was my first symptom but nobody knew), transverse myelitis, and a positive NMO blood test. I had all three. I was devastated at this life altering, terrifying diagnosis, but at least I now knew what I needed to confront.

I live with a multitude of residual symptoms (some visible, some invisible) from the onset of my attack in 2013, and each new day is unpredictable and challenging. I feel extremely fortunate though, that the correct diagnosis was made and that after a relapse in 2014 that caused additional permanent damage, I found out about Johns Hopkins NMO Clinic in Baltimore, a clinic dedicated to treating patients and finding a cure. I couldn’t believe my luck!! I met Dr. Michael Levy, an expert in NMO, who was at Johns Hopkins at the time and who recommended Rituxan infusions as a course of treatment. Dr. Levy explained that the treatments would not reverse any permanent damage or alleviate the residual symptoms caused by my initial attack and relapse, but could significantly lessen the likelihood of future relapses because it kills the CD19 and CD20 cells that rear their ugly heads and attack my spine. In the spring of 2014 I had my first round of Rituxan infusions in Baltimore and tolerated them well. In my case, these cells begin to repopulate approximately every six months, as blood monitoring shows, so I continue to have these life-saving infusions every spring and fall. I am happy to report I have not relapsed since.

There is no doubt in my mind that without this treatment, I would have relapsed repeatedly, and quite possibly be in unimaginable physical shape. While the future is uncertain and there are no guarantees, Dr. Levy, without question, saved the quality of my life, and for that I am grateful every single day, no matter how challenging it is.