Susan’s Story

One night, I was sitting at my desk working an overnight shift when I noticed that my right jaw was going numb, almost like I had Novocain wearing off – odd, but it was easily ignored. Over the next few days, the numbness spread to more of my right face, and I was beginning to have issues with the whole right side of my body. I was losing strength and startinga to notice minor issues walking. My PCP immediately sent me for an MRI, but it came back clean, so I was referred over to a neurologist.

My initial visit with the neurologist was underwhelming. I explained how I had been taking care of my mother for the last year, and how she lost her battle with cancer. I was emotionally and physically exhausted, taking her for treatment during the day, working the overnight shift at a pharmacy, all while parenting my 8-year-old son. I explained how the numbness had come on out of nowhere and was progressing. The doctor’s initial conclusion was that I likely had Bell’s palsy, and that exhaustion was catching up with me, even though my mother had passed 4 months prior and my life was starting to calm back down. I questioned if I could have MS, but was told that this was unlikely. A spinal tap was offered, but not recommended – needless to say I declined.

Time passed. I quit working overnights and focused on my health. The symptoms subsided. It became an interesting anecdote during a tumultuous time.

After two years, I again started to experience subtle symptoms. I became the Director of Digital Services for a marketing agency – marketing agencies are notorious for long hours and high levels of stress – I started working 60-80 hours weeks, managing large website developments and roll-outs, I had to travel frequently for business. Juggling family/health/stress became a bigger challenge. Slowly, I started to notice some odd symptoms. I was exhausted, but who wouldn’t be with that kind of schedule?! I was having more and more issues concentrating and assumed that was why I was having issues coming up with words at times. I took a big fall going up a flight of stairs and assumed I was being clumsy. Then the numbness came back and I just knew something was wrong.

I went back to my old neurologist. While waiting in the exam room, I could hear her swearing outside, mad and frustrated that I had not gone for the tests she had previously recommended. When your body isn’t functioning, and you are scared, hearing a doctor swear about you is the last thing you need. I really needed help and had waited so long for this appointment, but decided that she was not someone I trusted with my health. I got up, walked into her open office, and told her that she no longer needed to worry about me as a patient. I was very proud of myself for standing up for myself and being strong… until I got to my car and started crying.

I called my PCP in tears who was horrified at what had just happened. She called me back within hours and had set up an appointment with Dr. Andrew Bouley for only 2 days later. Dr. Bouley was amazing from the moment I met him. He spent so much time with me listening to my whole story and all my symptoms. He walked me through what MS was and what I could expect for diagnosis and treatment if it did turn out to be MS. Wasting no time, he immediately sent me to the ER for a rapid workup given the severity and persistence of my symptoms. Within 2 days, I had my official diagnosis of MS. One week later, I was getting my first course of steroids to help me fight through the attack. Not too long after, I started Ocrevus, and my quality of life has improved dramatically since! 

When Dr. Bouley told me he would be coming to The Elliot Lewis Center, I didn’t hesitate to follow. How could I not follow a doctor who has given me so much? It is his care that allows me to live the life I have always wanted. Knowing that I have him as well as all of the other amazing doctors, nurses and staff on my side is a big source of strength. I want to get my care at a place where the focus is MS. At ELC, there is a community of patients and providers where you know that everyone is either fighting or fighting for you – when dealing with a chronic illness, this is the best gift anyone could give you.

I am healthier than I have been in over a decade. Since my MS diagnosis, I have only had one small flare-up. I also fought and knocked into remission a very rare form of cancer which would have been much harder to fight if I didn’t have my health. I learned that I had been living with the symptoms of MS for so long that they had become my baseline. With only Ocrevus and cannabis to help me, I am more active than I have ever been. I am back working full-time in marketing for a company running MS clinical trials, so I am able to help bring possible new MS treatments to market. My son is 12 now and in middle school. I am a streamer in my free time and work to try and provide a positive outlook for other people struggling with chronic illnesses. If I can give back even a small part of what I have received from Dr. Bouley and the ELC, then I will be happy.

If there is one quote I could pass on to others, it is the following from Teddy Roosevelt:

“Courage is not having the strength to go on; it is going on when you don’t have the strength.” This applies to all MS Warriors as every day is a test of courage, but knowing the ELC has my back makes it just a bit easier to muster that courage.