NMO and Autoimmune Diagnoses
Last updated: June 2023
When friends learn I have an autoimmune disease they often ask when and how I was diagnosed. My response: “Which time?” Getting a diagnosis for any autoimmune disease is hard. Getting an accurate one, especially for NMO, is even harder.
My first few diagnoses
The first diagnosis I was given for the constant, dragged-down tiredness I felt as a teenager was rheumatic fever. After weeks of dizziness in college the doctor recommended a counselor. While teaching school, it was hypoglycemia. A doctor in Boston said, “We could do thousands of dollars-worth of tests but I believe it’s depression.” The gynecologist treated the contractions that started and stopped over and over (nearly like my current leg spasms) in my third trimester of pregnancy as related to a virus.
Perhaps I'd long had symptoms of NMO
Being tired was always normal for me. I leaned against walls to deal with my dizziness. I wore my clothing inside-out to avoid the irritation of seams against my skin. Nothing helped the aching in my legs. I was losing my hearing. Massachusetts' summer heat and humidity were intolerable without AC. At times I felt confused and forgetful when I was stressed.
I remember the day vividly
Knowing I would miss our daughter when she left for Brigham Young University for college, I planned numerous projects. That avoided the loneliness, but it also drained my body physically, and in mid-November, as I buttoned my Levis to go out to rake leaves, I noticed a spot on my waistline where there was no feeling. When I rubbed it during the afternoon and evening, I found it was getting bigger. Then my right leg began to drag. The next night I couldn’t feel the temperature of a hot washcloth on my leg.
They thought it was shingles
There was a new diagnosis during my appointment with the doctor the following afternoon. Since the lack of sensation only involved one side of my body, she surmised I was beginning an outbreak of shingles. But there was no new diagnosis a week later, when, with no further signs of shingles, but with my leg sensation-less and without movement, I waited in my hospital bed for the results of an MRI.
I left with no answers
I’d been there for five days with solumedrol infusions, and though my right leg was paralyzed, that word was never used as we waited to see if the progression of the numbness had stopped. It had, and both my general practitioner and the neurologist said I was ready to leave. Instead of saying what was happening and giving me a diagnosis, the neurologist said to make an appointment after I was released and things had settled down.
I was sent to recover at a nursing home
Since my insurance did not pay rehab billings, my doctor planned to send me home, but my husband, who suffers from OCD, and our older daughter who was finishing her associate degree while living at home and who also has OCD, were not capable of caring for me. The decision was made for me to go into a nursing home until we could make arrangements so I would be safe at home.
My first experience with steroids
It was three days before Thanksgiving when the ambulance left me at the center. The infusions were finished and I was on prednisone. My husband was overwhelmed and since our daughter was too traumatized to drive, he had to take her to classes as well. We had no way of finding the necessary equipment and a caregiver. It was provident that our younger daughter had secretly made plans to return for Thanksgiving before I’d had any problems, and with her help we made the necessary arrangements so I could come home on Thanksgiving Day.
Propelled into the depths of depression
Neither of my doctors or any of the staff at the nursing home mentioned that I would need additional prednisone to taper down after leaving the nursing home, so my first experience with prednisone ended with an abrupt stop. With no scaling down from solumedrol infusions and prednisone, my depression was nearly unbearable as I watched my family trying to deal positively with my condition.
I was told I had MS
A month later, I woke to discover I had also lost sensation and movement in my left leg. I was devastated. Back in the hospital, there was a spinal tap, painless to me since the numbness had progressed up my back, and more solumedrol; then finally, a diagnosis. I had MS and it was aggressive.
Finally: an accurate diagnosis
Again, I was released to a nursing home. This time the paralysis had spread up through my ribcage. I spent ten days learning how to live with a torso and legs that the therapist said had the strength equivalent to that of an amputee. For nearly ten years while on daily Copaxone injections and three to five solumedrol infusions monthly, I was in and out of the hospital and my wheelchair with flareups and recoveries. Then I was tested to see if I could get on a new drug. The results were astonishing. I didn’t have MS. I had NMO.
Looking for a new specialist
The change in diagnosis did little to change my treatment. Learning the Copaxone shots I’d been giving myself hadn’t changed the course of the disease was frustrating, but I stayed with the same neurologist and continued the steroid infusions. Dissatisfied by the progression of the NMO, my neurologist tried a series of plasma exchanges. I had trouble with the Benadryl I required because of an allergic reaction and when three exchanges were scheduled in a short length of time, the last two only eighteen hours apart, neither my neurologist nor I was not pleased when I cancelled the last procedure. My husband and I decided it was time to try a neurologist who specialized in NMO. So far, so good.
Each NMO diagnosis story is unique
We all have our own stories about our diagnosis and few of them are short or tell of an easy process. Our descriptions vary from excruciating pain to numbness and immobility in varying parts of our bodies. But patients can only get the right treatment with the right diagnosis. Fortunately, doctors now have tests which verify the identification of NMO, and knowledge of the specific medications and treatments that work best for it.
I am a person with a physical illness
Though learning I had a rare, less researched disease was frightening, it was also beneficial. I have a neurologist specializing in NMO, so I get the right treatment and medications. I have access to information telling the best ways to adjust to and treat NMO symptoms. The results have included more than just medical advantages. They have helped my self-esteem. I now know it is not depression or being a slacker, but NMO causing the lethargy that makes it impossible for me to be as productive as I want to be. I know I am not someone using imaginary feelings to get attention or to get out of anxiety-producing experiences. I am not a hypochondriac. I am a person with a physical illness.
My outlook has improved
My self-image has improved. Recalling my accomplishments despite having NMO makes me feel worthwhile and valuable. I wonder what I could have done if I’d not had the disadvantage of NMO, but it doesn’t matter. I’m pleased to be me.
Life with NMO is difficult, but I’m good. I’m not useless or lessened by NMO, I’m a normal, sometimes happy, sometimes sad person who has been diagnosed with NMO, and I’ve learned to live a normal life with it; my normal life.
Typically, how much time passes between attacks for you?