Emily's Story
A twenty year old living life with multiple sclerosis.
Hi there, I'm Emily Lombardi! I know you probably want to jump right in to learn more about my life with MS, but I want you to get to know me a little bit before that. I am 20 years old and a Communications/marketing Student at Kean University. I am one of 2 sets of twins, all girls might I add, my twin and I being identical. The picture on the right is of my me and my twin (her name is Ashley). I enjoy fishing, golfing (mostly mini golfing), baking chocolate chip cookies, watching Netflix and spending time with friends and family.
How it All Started...
I was recently diagnosed with multiple sclerosis in March of 2020. I started off with having symptoms of being numb from my head to my toes on the right side of my body alongside feeling like my limbs were heavy (dead weight). After having these symptoms for a few days, I ended up having to go to the hospital to get CT scans and MRIs to figure out why I was feeling this way. The first time I went to the hospital the doctors did a CT scan and nothing showed up on those scans so I was sent home and scheduled an appointment with a neurologist.
I continued to not feel well after the next few days and wound up back in the hospital. This time around I got MRIs of my brain and spine and found out I had a lesion on my brain. This lesion was from the plaque that had flared up from my MS. My nerve endings were deteriorated. I was admitted into the hospital with need for more testing to rule out that it wasn't a tumor. I had lots of bloodwork done to also rule out other types of diseases. One of the more invasive tests I had done was a spinal tap to check my spinal fluid for oligoclonal bands which is correlated to the diagnosis of MS. The results from the spinal tap came back a few days later and I had clonal bands in my spinal fluid. I was in the hospital for a week with no official diagnosis of multiple sclerosis, however that was what was implied. I had an appointment 2 weeks later with an MS specialist that would be the final judgement. That appointment confirmed that I did in fact have MS.
Moving Forward...
The doctor I had met with for that appointment wasn't the right fit for me. I had scheduled another appointment with a different neurologist a few weeks later to get a second opinion and see if I liked him better than the first doctor. After all it's important that I was comfortable with the doctor I chose to treat my MS. After meeting this new neurologist, I instantly liked him and his approach to my plan of action of treatment. My symptoms should subside on their own, given some time of course, and the next step was to find the right drug for me. My doctor and I decided to start the oral medication called Gilenya (fingolimod) for my treatment. At this point in time (March 2020) COVID restrictions were at an all time high and hospitals were overwhelmed with COVID patients. We decided to wait a little bit on starting the medication because if I were to have any side effects or something to go wrong we didn't want to end up back in the hospital especially since I am immunocompromised. At the time, my MS wasn't that aggressive and everything seemed to be okay. From April until August, I was doing well with walking daily, light exercise a few times a week, and genuinely feeling almost back to normal. I officially started Gilenya on August 3rd and had no reaction to it. In the middle of August I noticed some new symptoms start to arise on the left side of my body. My left arm and leg began to feel numb and heavy like my right side did earlier this March. Realizing that these were new symptoms I new they would dissipate on their own given some time and within two weeks they subsided. Fast forward to September, from my rib cage down had gone numb and filled with pins and needles going down both legs to my feet. I knew something wasn't right. I went to my neurologist, told him about both sets of symptoms and he prescribed me an MRI of my spine. The results came back that I have 2 new lesions on my spinal cord and we now need a new plan of attack.
What's Going on Now...
After finding out I have 2 new spinal lesions, my neurologist recommended me to go to the Linda E. Cardinale MS Center in Freehold for a second opinion of treatment. After going over all my results and symptoms we decided to go and try the IV infusion drug called Ocrevus. It's a treatment every 6 months through an IV and is more aggressive in treating my MS. I start my first treatment in December and we go from there. I have good and bad days with my symptoms, but I take each day as it comes and get through it.