Sunday, October 18, 2015

Neuromyleitis Optica Spectrum Disorder. The Journey of a former Hospice nurse.



This is me before my life would forever change. I was a successful hospice RN. I had met the love of my life. I was happy and carefree. I was an avid photographer, writer of poetry, singer, and ballroom dancer. I had an active and beautiful life. This all came to a screeching halt on October 4th, 2012.

Early that year I was having a strange and peculiar headache (more like an odd pressure feeling) in the fronto-parietal region of my brain. I was sent to a not so good neurologist who did an MRI and MRA of the brain and dx me with Chronic Migraines. However, the typical migraine medicines really did not help this so much. 

I was also having cognitive issues and fatigue, but I blamed it on anemia. My nursing documentation suffered and I just did not feel well. This continued to worsen as time went on. Then came Oct 4th, 2012 3am. I woke up with excruciating fiery pain that ran from the base of my spine down to my lower thoracic spine and out over my back like angel wings. I had a peculiar viral illness three days before the event and was dizzy the day before. I went to the ER who did nothing and told me I had a virus and sent me home. The pain continued so I went to my neurologist looking for answers. He put me in the hospital for observation and did a LP which he claimed was normal (I would later find out that it was not and nor was my MRI of the Brain). He sent me home with a pain gel. The symptoms continued and I went back to him again. He gave me an occipital nerve block and sent me for therapy for my neck. None of these measures helped. 

I then played my on patient advocate feeling something was not right with my neck. I asked to see the neurosugeon who had done my lumbar laminectomy in 2008, but before I could go I had to have and MRI of my neck and bring all my MRI's to his office. Much to my surprise the brain MRI showed demylelination and gliosis and the MRI of my cervical and upper thoracic showed demyelination of the cervical and thoracic spinal cord. I was then referred to a demyelinating disease specialist.

By the time of my appointment, I had lost leg strength, balance, upper body strength and remained dizzy. This neurologist did an MRI of my thoracic spine and drew all sorts of blood work. In the interim I had an attack of retrobulbar optic neuritis in my left eye that cause color desaturation and decreased acuity. I was treated with a five day round of Solu-Medrol. After many tests later, I was finally diagnosed almost a year later with Neuromyelitis Optica Spectrum Disorder and Meneiere's Disease as well.I was started on various medications for spasms, seizure prevention, so on and so forth and placed on the chemo drug Rituxin. Rituxin is used as a hopeful preventative of further attacks. I tolerated it very well and get it ever 6months.

My spinal cord continued to have problems and on subsequent MRI's, a sub arachnoid cyst was found on my thoracic spinal cord that ran from T4 to T8. This was removed by my prior neurosurgeon. When he got in there he was able to see how atrophied the NMOSD had done to my cord. I went to rehab and had to learn to walk again, use my arms properly again, though the weakness would never go away due to muscle fatigue from NMOSD.  

Time passed and I still suffered from easy muscle fatigue, poor balance, etc. It was a very difficult time. Then insurance changed and I could no longer have my Rituxin. I was on private disability because I could not get SSDI due to the first neurologist's lies. I am still awaiting my appointment before ODAR judge. I was placed on methotrexate and failed it. I had three frightening attacks, two at the end of 2014 and one in March of 2015 which paralyzed me from the lower ribcage down, making it hard to breathe. I contacted the makers of Rituxin and they are providing it for free. I have not had any further attacks since. Though the old damage causes many problems. 

The weakness and fatigue remain. I developed narcolepsy with cataplexy. I have low endurance due to muscle fatigue. I still have color desaturation in both eyes. I still walk off balanced and use a cane for short distances but for longer distances have to use a rollator walker. I don't go out much aside of doctor appointments, therapeutic horseback riding, and Silver Sneakers yoga and aquatic exercises. Plus I see a psychiatrist and a counselor for severe depression that had led to a suicide attempt in 2014 when I was about to lose my house, my car and my two dogs and my cat along with everything else. 

I am doing much better, though more recently I was dx with Narcolepsy with Cataplexy secondary to the NMOSD. I am so many medications to keep me alive, that I sometimes get frustrated. It doesn't help that I have cognitive issues as well from the disease. A Facebook group is what keeps me going. That and my fiance and my animals and my therapeutic horseback riding. 

I do not know what the future holds. NMOSD is very unpredicitable and most people with it are either blind or totally paralyzed within five years. It is also deadly. Most die from respiratory failure. Indeed I have lost a few in my Facebook group just over the past year. I live my day minute by minute, for the next moment is never a promised one.