Here's My Transition to Secondary-Progressive Multiple Sclerosis
I’m a patient with secondary-progressive multiple sclerosis (SPMS). I’m 37 and was originally diagnosed at the ripe age of 25 years old with the more common relapsing remitting (RRMS) variation of multiple sclerosis. I’m here to talk a little about this emotional and very physical process through my eyes.
You can very easily Google the difference between the two stages. I also have done that as well. In fact, I plan on sharing some of that information, but I also want to put a personal spin on it.
Nine years of RRMS
According to the MS Society, of the 85% of people with MS who are initially diagnosed with RRMS, approximately half will transition to SPMS within 10 years, and 90% will transition within 25 years.1 This was exactly what happened to me except I was granted 9 years of life with RRMS. I had the typical fatigue, optic neuritis, heat sensitivity, dizziness, and a few cognitive problems. I remember distinctly proclaiming, “Yes, I have MS, but it’s never stopped me from doing anything I want to do!” I had no problems walking. It was tricky sometimes, but I could still assimilate and function productively among my able-bodied counterparts.
Boy, have things changed
Mainly, I could still work a forty-hour workweek. I could drive and live independently. I remember walking without any assistive device. I think the moment I experienced a drastic decline in my baseline of independently walking and working, I reluctantly entered the territory of SPMS.
Wavering between RRMS and transitioning to SPMS
I must stress here, this was not a smooth, linear process. I felt like I was losing my grip on life. For a while, I wavered between the two diagnoses, which I now know is pretty typical. The experience of my husband purchasing my first cane was so frightening for me that I had to wait outside in the car! I just requested something cute. Years later, in order to get my first wheelchair, he had to give me a piggyback ride into the store! I was and likely still am stubborn to the core.
Relapses in SPMS
Again according to the MS Society, once this transition occurs, a person will gradually experience fewer relapses (also called attacks or exacerbations), and possibly none at all.1 In those people who continue to experience relapses, this disease course is considered "relapsing" as well as "progressive". “SPMS is primarily considered a progressive disease course because it marks the transition from the inflammatory process that occurs in relapsing-remitting MS to a process characterized by gradual destruction and loss of nerve fibers.”2 I read the words but was not ready for the absolute reality.
Requesting steroid infusions
During this time, I requested as many steroid infusions as possible. They made me feel better, but little did I know, they would bring me closer to a diagnosis of osteoporosis, too. In turn, I soon stopped that treatment.
I had to reinvent myself
In order to keep moving forward, I had to reinvent myself. I needed to make sure that I still felt purposeful. I did that by exercising the things that I could still do. For instance, right now I’m using dictation software in order to write this article. I attend monthly meetings to help me gather my thoughts around multiple sclerosis and its impact on my life.
Nobody prepared me, but still, here I am. I hope this smoothes your possible transition.
How well do people around you understand MS?