My journey with NMOS

My journey began October 4, 2012, but let me back up to three days prior to my symptoms. It was a Monday, I wasn’t feeling well and had a strange mix of a respiratory and gastro-intestinal virus of some sort. It lasted for about 24 hours. Went back to work on Tuesday. Felt a little tired from the virus, but was okay otherwise. (Forgot to mention I was a full time RN in the field of hospice) Come Wednesday I felt dizzy all day long and off balanced. I blamed it on dehydration from the virus and increased my fluid intake and electrolyte intake. Went home early and laid down for a nap. I was extremely tired. Got up and ate dinner with my fiance’ and watched some TV. Bedtime rolled around and he and I went to bed. Then 3 A.M hit. I woke up with the most excrutiating, burning like pain that ran from the base of my neck down to the edge of the ribcage so much so my boyfriend took me to the ER who gave me pain meds and phenergan IM and sent me home. Of course the combo knocked me out, but when I awoke later at 130 p.m. the pain was still there and in full force and the only relief I could get from it was to hang sideways off the edge of the bed with my head and shoulders hanging down or by arching my back. So I went to the neurologist I had seen earlier in the year for a headache that lasted for over two months that was accompanied by speech issues and hand tremors. He had diagnosed such as Chronic Migraine and put me on meds to treat such. (He had run an MRI of my head at that time and lied to me about it saying it was normal when it was not. It had shown areas of demyelination which I found out later) He sent me to the hospital and tested me for meningitis. Told me my CSF was normal when it had shown wbc’s and on a gram stain monocolonal cells. (Again he lied, telling me everything was normal and put on my discharge diagnosis I was there for a migraine and muscle spasms odd because I never complained once of a headache at that time). He sent me home with a compound pain gel which gave some relief, but the pain continued down my spine and outward like angel wings to the point it was literally paralyzing me. I went back and he did occipital blocks which just numbed my head and put me in PT for my neck. Well I was not progressing in PT. My arm muscles started to feel heavy and weak and the pain was not going away so I took matters into my own hand. I knew something must be terribly wrong with my neck so I had my PCP send a referral into the neurosurgeon who had done a lumbar laminectomy several years back. Before I could go see him, however, I had to have an MRI of the neck. Lo and behold, it showed demyelinating lesions from around C3 to what they could visualize of the upper thoracic spine. He recommended I go see a demyleinating disease specialist. I was also sent to an orthopedic surgeon at the time who said the same thing. Well I had a follow up with my other neurologist who looked at the discs and said if there was demyleination he did not see it and handed me back the disc rather agitated. I told him I was going to seek a second opinion and he dismissed me at that time. I finally got to see the new neurologist who looked over my discs and ran a multitude of tests. He kept going back and forth between MS or TM until I saw my eye doctor the following month and told him about the blind spots I had been seeing in my left eye. Lo and behold I had retrobulbar optic neuritis and was treated by my neuro with five days of IV Solu-Medrol and a prednisone pack post that. My new neurologist noticed I had a gait and balance disturbance and I failed my SSEP. By this time my arms had gotten weak as well and I could not lift more than five lbs with my dominant right hand nor 10lbs with my left hand. He then treated me with Acthar Gel because I wasn’t tolerating the Solu-Medrol too well. I did this for two months with no improvement in my weakness much to my dismay, however the antispasmodic he had put me on helped with the pain. Then came another attack only this one locked up my intercostal muscles where I would get stuck momentarily upon inhalation and could not release my breath for up to 30 to 45 seconds. This scared me so I mentioned it to my new neurologist. I was put on Epitol and Clonazepam at this point. My legs got weaker so another MRI was run of my Thoracic spine, not only did it show lesions but a sub-arachnoid cyst as well. This was removed in May of 2013. When the neurosurgeon got in there he noticed my spinal cord was atrophied from T3 down to about T12. He said that damage was not from the cyst and spoke with my neurologist. I also went to rehab after surgery and found out just how weak my grips and arm and leg strength really were. More blood work was run and my NMO antibody was right at the cusp of being positive which in my case and all the weirdness of my body may be a true positive for me. I was finally diagnosed with NMO in October of 2014. My meds were changed multiple times to adapt to the spasms. In February my neurologist started me on my booster dose of Rituxin, with the next dose two weeks post that one. I just had my CBC, CMP and CD19 absolute drawn yesterday. My neuro also sent me through a sleep study in the interim which showed I was having spasms in my sleep preventing me from going into deep and REM sleep. He increased my Tinizadine and put me on Trazodone at night to help me sleep as well as Ampyra and Nuvigil to help with the fatigue. I have chronic fatigue with this disease, along with muscle spasms that prevent me from standing more than ten mins. I fall asleep at random, forget entire conversations or TV shows, walk with a cane, have bowel and bladder issues and depression. I went from being a full time hospice nurse to disabled all in a day. It is a day I will never forget. This is why I have chosen to be a donor, advocate and teacher of this rare disease that is so misunderstood even in the world of medicine itself. I am doing my own research project online currently to see if there is a correlation between occupation and this disease. So far it is proving to be quite interesting.

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