Hey, Lakewish fam! I want to start sharing more about my journey with Multiple Sclerosis. I was officially diagnosed with MS 15 years ago when I was 24, in the fall of 2009. It certainly changed my life and lifestyle. Some of you are familiar with my story since then, but I am sure most of you aren't familiar with all the details.
Thanks to social media and my younger self being an unhinged over-sharer on social media, I was able to document the day my "first" symptoms started. Here's a timeline from August 24th, 2009:
- August 24th, 2009: Numbness on the right side of my face/head. Went to urgent care which sent me to the ER for fear of a tumor or stroke. ER conducted a CT scan which came back normal.
- August 25th, 2009: I scheduled a doc visit. My doctor scheduled an MRI.
- September 16th, 2009: I went in to have my very first MRI. My doctor called me the next day to come in to discuss the results. I knew it wouldn't be good.
- September 18th, 2009: My doctor informed me that there were 3 lesions on my brain, and that while they couldn't tell for sure it looked like something called Multiple Sclerosis.
- Additional testing between September 21st, 2009 and October 2nd, 2009 included about 15 blood tests, a second MRI and finally a spinal tap.
- October 6th, 2009: I was officially diagnosed with MS.
Eventually, feeling returned to the right side of my face. I have had two major attacks since being diagnosed - the lower half of my body went numb from the waist down for about 2 months in 2013, and the most recent one affected my right arm - pain, tingling and numbness. I also had a round of steroids following the birth of my son thanks to some other odd symptoms I was having with my vision and numbness.
I feel quite lucky to have a relatively mild case of MS. 4 major attacks in 15 years doesn't seem so bad. The most overwhelming and frustrating time for my husband and I was when we decided to start our family. Most MS drugs are unsafe to take when starting a family. So I went off of all disease-modifying drugs. We got pregnant within a few months, but it ended in miscarriage. I was heartbroken. We waited a few months to try again, but I was starting to have some symptoms and an MRI showed my disease activity was increasing pretty rapidly.
My Neurology team encouraged me to go back on some drugs that were "safer" if I was pregnant/trying to conceive. They gave me some awful side effects so I discontinued taking them. A few months later, we were thankfully expecting again and I went into remission. It's wild that pregnancy puts your body into remission with MS!
I'll continue to share bits and pieces of what my attacks were like and how I deal with everyday life. I believe that research is moving in the right direction and there is absolutely hope for a cure - and soon. Check out this quote from an article from UCSF: "A generation ago, most people with multiple sclerosis could expect to rely on walkers and wheelchairs or be limited to their bed within 15 years of diagnosis. Today, UC San Francisco’s discoveries are keeping millions with MS healthier for longer – many disability-free. Now, the university is paving the way for an MS cure in our lifetimes."
Powerful stuff right there - 15 years with MS could have looked so different for me if I hadn't been born when I was. MS is half the reason that Lakewish, Co exists <3 Thank you for being here!