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NMO Story: From Hospice RN to Disabled in a Day

It is a day I will never forget. I woke up at 3am on Oct 4, 2012 with a fiery burning, sever pain that ran down from the base of my neck to the end of my rib cage and out like a fiery angel wing pattern across my back. It was unlike any pain I have ever had before. Went to ER, which did nothing, told me I had a virus and sent me home.

I had been seeing a Neurologist early that year for a weird headache pressure like sensation in my head near my fronto-parietal lobe, so I went and saw him. He sent me in for a 24 hr obsevervation, did a lumbar puncture gave me pain meds and muscle relaxers. Sent me home the next day, told me my LP was normal (which I found out later he lied about the results of that and a Brain MRI I had earlier in the year.) He put me on a custom pain gel and that was that.

Went to him the next day, no pain relief other than hyper extending my neck and upper back while lying cross wise on the bed. He did an occipital block (which of course did nothing but numb my head) and got me set up with physical therapy.

Started physical therapy and was failing it. I could not do some of the excersises because my arms had begun getting weak especially the right one. Was discharged. Went back to my neuro and he said there was nothing further he could do. I was frustrated and angry at this point. I was still in pain and my arms were weakening.

Became my own patient advocate and called my PCP to get me in with my neurosurgeon that had done a lumbar laminectomy in 2008. Fortunately I had to get an MRI of my neck to see him. It came back positive with lesions from C2 to T3. He reviewed this and felt I had some form of Transverse Myelitis and because I had a copy of my Brain MRI by this time which showed areas of demyelination.
He referred me to Dr Brandes at Hope Neurology.

The day I had my first visit with Dr. Brandes, I had already deteriorated to were I could no longer lift over 4lbs with my right arm and no more than 10 with lbs with my left and my legs had gotten weak and muscle fatigue was bad. I had another lumbar puncture and 30 vials of blood along with an MRI of my Thoracic. spine. The results revealed more lesions of the thoracic spine down to T8. My SSEP showed decreased signal to both legs, but was borderline normal for my arms.
He said he had seen lesions like this before and started me on medications for muscle spasms, seizure prevention, pain medication and high dose Vitamin D because mine was extremely low.

Then the month after I saw him I had an attack of retrobulbar optic neuritis with blind spots in my left eye visual field. I was started on a five days worth of Solu-Medrol at Dr Brandes’ office.

I gathered all the tests I had done by my prior neurologist and found out I had white blood cells in my spinal fluid along with monocolonal cells on the gram stain and a few other abnormalities.

Further tests and decline in my leg strength, fatigue etc, I was finally diagnosed a year later with NMOSD. I was started on a Rituxin regime every 6 months.

I had other MRI’s after what appeared to be new acute attacks and an arachnoid cyst of the spinal cord had developed out of the blue from T4 to T8 and my spinal cord was twisted anteriorly to the left.

I went back to my neurosurgeon and had surgery to remove the arachnoid cyst and during surgery it was found that my spinal cord was atrophied from T3 to T12. I went to extensive rehab to learn how to walk again with a walker and a cane, and ways of adapting to the way my new state of living was going to be.

In 2014, I had a collapse event in which I collapsed and fell asleep for nearly three days. Dr Brandes sent me for a 24 hour sleep study and it was revealed I had narcolepsy with cataplexy along with hyponea. I had already been using a CPAP. At this point, I had had three other attacks between the end of that time and the beginning of the next year. Given Solu-Medrol each time.

It is now 2016, my last NMO igg test was indeterminate at 4.9. I suffer daily from chronic muscle spasms of my back and legs. I walk with a cane or a rollator walker to help with balance and leg weakness and muscle fatigue. I tire easily and have cognitive issues with memory and speech which had came with my first attack. I have pool therapy, physical therapy, speech therapy and occupational therapy. I still get Rituxin every six months. I have had to give up so many tasks I used to do, like house cleaning, walking and playing with my dogs, hiking and trips to the mountains to take photography. I suffer from Major Depressional Disorder. I has not been an easy road. Each day is lived in the moment, because I never know when I new attack may occur like it did yesterday 3/8/16, I am thankful for every day I wake up with sight and without total paralysis. Most of all I try to live my life as best I can.

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