My Slide Into Secondary Progressive Multiple Sclerosis
Editor's note: This article was written and published in 2015. The MS treatment landscape is constantly changing, and you can read updated information about available MS therapies here.
While in nursing school, I was diagnosed at the prime age of 25 with relapsing-remitting multiple sclerosis (RRMS). The diagnosis was quick and to the point. I believe this was because we were on an academic state university campus. I know that typically people have symptoms for years and years before they get diagnosed. I was one of the lucky ones, if you consider that lucky. I returned back to class. I don't think this was normal.
I continued nursing school with only small problems. After graduation, I became interested in cardiac rhythm disease management and started working for the medical device company Medtronic, at the time, my dream job. I remained there for as long as I could work safely, which happened to be six years. During this time, I had been on every medication available to me. But my RRMS had evolved into secondary progressive MS (SPMS). According to the National MS Society, this happens within 10 years and 90% would transition within 25 years. For me, it was just nine years. It was gradual, not like normal remissions and flare-ups. I had previously stopped driving. So it wasn't just that. My walking became increasingly more labored, until I was wheelchair-bound. I went to a new neurologist and he said I was in SPMS as soon as he saw me in a wheelchair. He said any change in your baseline constitutes progression.
Having to move closer to family
So my life began to look completely different from when I was first diagnosed. Over the next few years, I not only had to quit my job, I also had to move from Washington DC back closer to family in Louisiana. Something I initially dreaded. I felt like a failure. Plus, my husband couldn't move back as soon as I could. So, I was with my loving family for about a year before he made it to Louisiana.
Unfortunately, there is no treatment for SPMS. Currently, I am on a chemotherapy drug commonly used to treat breast cancer. Personally, I find this unacceptable.
My journey with SPMS
I need help with daily tasks. This includes bathing and toileting. But one of my biggest problems is my inability to multitask. It requires a level of cognition I no longer have.
This has been my journey with SPMS. It has been cushioned with love from my husband and family and eased with humility.
Do you ever experience MS bloat?