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NMO Story: Living with NMO – An Evil Disease

Living with NMO – An Evil Disease

My name is a Patty Frazier, I am 59 years old.  I was diagnosed with neuromyelitis optica (NMO) three years ago.  I awoke one morning to a stabbing pain in my lower back, I could barely move.  I was admitted to St. Luke’s hospital.  The first few days all I would do is vomit and then have hiccups, this went on what seems like eternity.  The doctors were frustrated. The hospital ran every kind of test on me and finally decided I had phenomena.  When they had an expert look at my lungs they found I had tiny, what looked like splinters of glass all through my lungs.  They finally ruled out phenomena and called in a neurologist, frustrated by my days of throwing up and then having hiccups. The neurologist ran some blood work and ordered several MRIs.  At 9 p.m., the neurologist called me to notify me that I had NMO, Transverse Myelitis (TM).  The doctors were still stumped by my lungs and to this day after many, many test and biopsies they still don’t know what is wrong with my lungs.  What I did find out is that throwing up followed by hiccups are beginning signs of NMO.

I was in St. Luke’s for six weeks, I was literally paralyzed from my bust-line down to my toes. They did five treatments of PLEX (plasmapheresis), seven days of 1000 mg of intravenous steroids and finally a treatment of Rituxan.  Little by little I regained use of my legs and regained feeling.  When I was released I was using a walker but I could walk.  Once I got home, little by little, I was able to walk without the use of the walker; finally, I walked without it.  I led a fairly normal life, I was able to drive and do what I used to be able to do; the only symptom I had was severe pain in my back between my shoulder blades. It was so painful I could feel the pain clear through to the front of my chest bone.  About one year later I awoke to a stabbing pain in my lower back. I knew I was relapsing. I woke my husband and he took me to the emergency room at St. Luke’s.  St. Luke’s admitted me once again.  Once admitted, within three days I was once again paralyzed from my waist down to my toes.  The hospital this time knew what to do, they treated me with five treatments of PLEX, 1000 mg of intravenous steroids and Rituxan.  I was released five weeks later.  This time I was dependent on using the walker to walk. 

It has now been three years. I also have bulging discs in my lower back, one is right on my tailbone that creates horrible pain and has caused my legs to go numb and my feet to swell horribly. In January, I go to see a neurosurgeon with their plans to insert a morphine pain pump in my back. Honestly, I just want surgery to correct the bulging disc’s but I keep hearing, “You are not a surgical candidate and you are not going to find a surgeon who will do the surgery.”  The MRI showed that I do not have lesions on my spine in that area so I don’t understand why they won’t do surgery. I am tired of them treating the symptoms and not addressing and fixing the problem. 

So at 59 years old, I no longer can drive. I must use a walker to walk, which walking is VERY painful to do.  I sit in a chair and watch TV all day, and dream of the life I once had and try to ignore the painful existence that I live with today.  Unfortunately, I’m not much of a reader, but today I did order the book, “The Power of Rare” recommended by, Guthy-Jackson.  I am blessed that I have the most wonderful husband on earth, Clifford, who takes such good care of me.  Clifford always tells me, “We are in this together; you didn’t ask for this and together ‘we’ will get through it.” So is my life living with NMO TM.

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