Lindsey’s Story
Lindsey’s MS story starts with an optic neuritis attack at 23 years old. She describes her journey over the last 15 years.
My MS journey began right around Christmas 2008 when I had my first attack of optic neuritis. The doctor I saw said, “I think you’re fine. If we do an MRI test it might show you have MS but I don’t think so . . . so we will give you a pass”. I was not even 24 years old, I was living with my boyfriend (now husband), working, and living a typical life, and I believed what the doctor told me.
Almost like clockwork, around a year later, Christmas 2009, the same thing happened again with my vision. After seeing one neurologist, who said I did not have MS, I saw an MS specialist, who took one look at my MRI and pretty much said, “Ok, you have MS. What else is new?” I had just turned 25 at the time of my diagnosis, and I honestly didn’t think much would change. I assumed I would start a medication and just continue with my life.
Twelve years ago, there were not as many treatment options for people with MS compared with today. My doctor at the time suggested I choose one of four medications, all of which were injections. He simply wrote down the names of the medications, how they were administered, and their potential side effects, and he asked me to decide which one I wanted to try. I chose the one I thought would be the best option, which was a weekly intramuscular injection.
My neurologist recruited me to participate in a biorepository sponsored by The Accelerated Cure Project for MS (ACP). I wanted to do whatever I could to help with research, so I donated blood, completed surveys, and signed up for newsletters. I attended a young professional event and began to get further involved. I wanted to give back to the MS community. I volunteered at ACP fundraising events to help facilitate MS research, something that is very important to me.
When I was 26, I got engaged. I was living in Boston and life was good. However, I had a few more attacks of optic neuritis. After discussion with my neurologist, I switched medication from the injection to a monthly infusion. I was working in the corporate world, and my job wasn’t very flexible about absences for infusions or doctor’s appointments. A position at The Accelerated Cure Project for MS as a Development Associate became available, and I was lucky enough to get the position! My role at ACP has changed over the years, as has my MS, but I feel so lucky to work at an organization that is helping to find a cure for MS.
When my neurologist moved out of state, I was fortunate enough to get introduced to Dr. Ellen Lathi and her amazing team at The Elliot Lewis Center. I began to see Dr. Lathi during the winter of 2014. I loved the relationship we built. She was on my side and wanted to make sure I had the best quality of life I possibly could. It was amazing to be able to email her and get a timely response. I didn’t have that with my previous doctor, and her availability was very important to me.
Over the next few years, my gait declined, and I transitioned to secondary progressive MS. Dr. Lathi encouraged me to get a handicapped placard for my car (even though “I wasn’t sure I needed it”), she recommended that I use a cane to reduce falls (even though I thought “my walking wasn’t too bad”), and she convinced me to see a urologist to learn how to self-catheterize (another thing I was hesitant about). Although I was uncertain, she helped me through the transition, and everything she recommended improved my quality of life. I am grateful she pushed me to try new things even though I didn’t think I needed them or was ready for them. In 2016, I had my son, and throughout my pregnancy Dr. Lathi and her team were supportive and welcomed me back when I was ready to re-start my treatment.
I always did as much physically as I could to help maintain and improve my gait and reduce my spasticity. After multiple medications were not successful, Dr. Lathi and the other doctors on my care team helped me make the decision to get a baclofen pump. It was not an easy decision, but the potential of improving my gait made me decide to have the surgery. I had the procedure in 2017. The recovery was not as easy as I thought it would be. It was a lot of work. I spent 2 weeks at Spaulding Rehabilitation Hospital, followed by outpatient physical therapy and personal training sessions. The continued encouragement from my family, friends, and providers was so important to me. I was finally able to see my hard work pay off with improvements in walking speed and a more fluid gait.
I currently spend most of my time taking care of myself physically and taking care of my family. I love to play with my 6-year-old son and spending time with friends and family. I still work at The Accelerated Cure Project where we continue to do work to help advance research through the biorepository. A program that I first contributed to in 2010. I am also involved in the iConquerMS initiative that brings together people with MS, their care partners, and researchers to better understand MS and search for solutions.
I also devote time speaking with people that are newly diagnosed with MS. The message I try to focus on is to be your best advocate. I know now that I probably could have been diagnosed earlier and could have been on a more effective treatment from the start if I had known more about advocating for myself. You know your body the best, and you need to make sure that you’re being heard. I am very fortunate to have wonderful family and friends who support me and a wonderful care team that is always on my side to help me to continue to improve and reach my goals.
