Diagnosis Story

Almost nine years ago I was diagnosed with Multiple Sclerosis on my freaking birthday. Happy birthday to me! I had sharp eye pain in my left eye and after an emergency visit to my optometrist they sent me to the ophthalmology department at Northwestern in Chicago. In what seemed like an episode of Grey’s Anatomy, doctors, residents, attendings and what appeared to be everyone at work that day, came in and out of my room to shine bright lights in my eyes. I was unceremoniously told that I had optic neuritis (inflammation of the optic nerve) and probably MS and that I needed to walk to the emergency department and be admitted to the hospital. What?!?

After a four-hour MRI, a spinal tap and countless neurological exams, I was officially diagnosed. I went from thinking I was a healthy and active woman to being told I now have a lifelong diagnosis for a disease with no cure.

You can read more about my diagnosis story on Web MD.

Dynamic Disability

With my first official relapse post diagnosis, I went blind. What a way to jump in the deep end of illness, right? With a little luck and a lot of IV steroids, I gained my sight back completely over the course of about two weeks. Five years later, I began a slow but constant descent of my ability to walk. I went from walking 10-miles a day to two to not being able to walk around the block. When the world shut down, I walked out of my office unaided and over the course of the last two years, I began using a cane and now a rollator (AKA a transformer-esque walker). Spasticity increased as well as numbness, tingling and extreme heat intolerance. But most importantly, my constant companion since diagnosis has been crippling fatigue. Note: if you don’t suffer from chronic fatigue, please refrain from telling someone that you understand what tired feels like. I’m begging you.

Some days are good, some are bad. It’s the uncertainty that can wreak havoc on your sanity. Disability is dynamic. It changes by the day, the hour, the minute. I am constantly balancing “listening to my body” and “move it or lose it.”

You only ever see a fraction of the struggle.

Disease Modifying Treatments (DMTs) AKA drugs people take for MS

• I started on Rebif which brought flu like symptoms with the three-times-a-week self administered shots.
• I tried Plegridy and had quite the allergic reaction to the one shot I took. I had a welt the size of a softball at the injection site. Two thumbs down, do not recommend.
• I then switched to Copaxone, the oldest but most recommended DMT. Note: you have to fail the less effective medications before you advance to the big guns. Why? Ask insurance.
• My neuro team said I could graduate to the big guns — twice a year infusions. I started with Rituxan and eventually found my way to Ocrevus.

These medications were touted at the time of prescription as “the best option available” and my least favorite phrase doctors say “they appear to be well tolerated.” This last phrase said by people who have never taken a single one of them.

Now I’m embarking on a new journey for treatment in the hopes I can tell this disease to F*** off. Read more about Bone Marrow Transplant for MS and what HSCT entails.