As many of you know, I was diagnosed with MS (multiple sclerosis) in the Fall of 2012, fast forward 5 years later the doctors have determined that I have a different demyelinating disease called, NMO (neuromyelitis optica). I was a puzzle to the doctors for a while, meeting the criteria for both diseases, so my diagnosis went back and forth, a few times. Here is as quick of a summary as I can give of my story, because it is far too long and complicated to get into the nitty gritty…
And so it begins…
It was an eventful Spring and Summer (2012) for Alex and I. We got Murphy, our yellow lab, I was applying to nursing schools, we bought our first home in Prairie Village, and we got engaged!
I started having symptoms during that time in the Spring, worsening of headaches and numbness and burning in my hands…etc, but it was sporadic so I didn’t think anything of it, and with all of the above changes, I figured it was just an overwhelming (exciting!) phase of life. At the time I was an avid runner so the numbness would be the worst after running on hot days, but again, sporadic and would improve after my body had a chance to cool down. Over the next couple months my symptoms worsened, so I figured it was time to get some labs drawn, I was convinced it was my thyroid, as that runs in my family. Lab work was fine, but not even a week later my symptoms significantly worsened. It was difficult to touch anything due to the burning in my hands and I had a tight banding sensation that put pressure on my chest. At the time I worked in a Neurology office that was in the process of becoming an MS Center (talk about coincidence!). I told my friend who was a nurse I worked with, and my symptoms were alarming enough to her that she told the doctor. After an exam, he immediately ordered MRI’s.
Somehow I slept right through the 90 minutes of my first MRIs; noises I would come to know quite well in the next few years. I met with my doctor again, which revealed I had one spot, which looked like a demyelinating lesion on my cervical spine (neck), the one part of my spine we didn’t do a focused MRI exam on, so back to the MRI I went the next morning. The results were what he suspected, a single enhancing demyelinating lesion on my cervical spine (enhancing just meant that it was actively demyelinating). I was in the midst of my first true exacerbation, which means the lesion on my spine was active. He made a list of other testing to be completed as well as some high dose IV steroids to decrease the inflammation that occurs with an enhancing demyelinating lesion. As a few of you may know, I am quite stubborn (something my doctor learned VERY quickly), so I had to “think about things” before I agreed to anything. Because I worked in the neurology office, I knew just enough to be a knowledgeable about what this all meant and knew just enough for it to be trouble at the same time. Eventually, I succumbed to doctor’s orders. I had additional testing, including an LP (lumbar puncture), which takes a sample of your spinal fluid to be sent for lab testing. The results of that and other testing revealed this was most likely MS, but the diagnosis was not yet official. I saw a specialist in Dallas for the first time in the early Winter 2013 and he also agreed that an official diagnosis could not be made, but he felt moving forward with treatment for MS was the best option at that time. So I agreed to begin treatment, which was a medication called Tysabri, a once monthly IV infusion.
Fast forward to the end of 2013, is when everything changed. During nursing school in December 2013, I had significant loss of vision in my right eye, and ultimately was hospitalized for the first time to receive PLEX (Plasma Exchange or Plasmapheresis). This is the first time my doctor and I discussed the possibility of a diagnosis of NMO. I had a lab test sent to the Mayo Clinic, which checked to see if I carried the NMO antibody, which was negative (I have continued to test negative for this antibody). After that exacerbation, my doctor switched my treatment to Rituxan (Rituxmab), the goal of this medication is to deplete the body of the ‘B-cells’ that attack the CNS (central nervous system) with this disease.
Since this time I have had multiple symptoms including, loss of vision, numbness, weakness, migraines, fatigue etc. Some of these symptoms come and go and some I still suffer from daily. I have done treatments for these ‘exacerbations’ which either includes IV Solumedrol (high dose IV steroids) or have been hospitalized for PLEX. I have seen the specialist in Dallas two more times, and a specialist in Arizona once. One agrees with my doctor, this is most likely NMO and the other feels it still could be an MS diagnosis. But as of late, the diagnosis remains NMO. I continue to get preventative treatment with Rituxan, once every 6 months.
In the past 5 years I have gone through every emotion in regards to this. In this trial of life, the most profound thing to happen was, learning to truly rely on God, and him first. And so the journey continues… With this public sharing of my story, which I swore I would never do, I feel as though this journey has a new beginning for me... we shall see where the next road leads, after the 13.1 miles that is!