I have known for a little more than 10 years my Multiple Sclerosis is no longer considered relapsing remitting. 10 years ago that information was very hard to hear.
I remember thinking, "Sure whatever, doc. Like you know for sure that I now have secondary-progressive MS. Seriously."
But he did, and now I think I understand why.
As many of us know, MS can be categorized as relapsing**-remitting**, characterized primarily by relapses;** progressive-relapsing** or** secondary-progressive**, with either relapsing and progressive characteristics; or ** primary-progressive**, characterized by steady worsening of neurologic functioning without any distinct relapses.
Like most of us living with this disease, I fell into the relapsing-remitting group for the first few years after my diagnosis.
Secondary-progressive MS 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. Of the 85 percent of people initially diagnosed as relapsing-remitting, approximately half will transition to secondary-progressive within 10 years, and 90 percent will transition within 25 years. Kind of confusing, huh?
But the important part I’ve taken away from this diagnostic change is that, according to the National Multiple Sclerosis Society, "Once this transition occurs, a person will gradually experience fewer relapses (also called attacks or exacerbations), and possibly none at all. In those people who continue to experience relapses, this disease course is considered relapsing as well as progressive."
So when exactly did my doctor come to this conclusion? 2001 was a tough year for me emotionally and, as I look back now, physically too. My health just started becoming much more unpredictable. I was falling more than I was accustomed to and more fatigued than normal, but treating my disease progression with physical therapy and a course of IV solummedrol as I’d done in the past was not giving me any relief.
To say I was a basket case would be an understatement. I was so very upset and scared and was a nuisance to my neurologist I wouldn’t stop calling him. Asking questions about what he was going to do. I needed help" anything he could do. And that’s when he first recommended plasmapheresis. Interesting, I thought, but what is it?
He explained that plasmapheresis is a blood-cleansing procedure (also known as plasma exchange) that removes the circulating antibodies thought to be active in my MS. Through this procedure whole blood is withdrawn from the person and then the blood is separated into red and white cells using a centrifuge. Then the red blood cells and, in my case, synthetic albumin was transfused back into me.
In 2002, I put faith in my doctor and tried this unconventional treatment. He thought it would be an effective secondary therapy for my attack that was not responding to previously effective treatments. At that time I was desperate for relief, and plasma exchange gave me some. At least, for a while.
A few months after it finished, I started worsening again. I learned then that plasma exchange should be considered a treatment alternative only for the few who do not respond to steroids and should only be used for a short time.
Sadly when plasmapheresis no longer helped, my doctor told me the reality of my disease progression. When he did, I decided to begin treatment using Novantrone.
I will never regret trying plasmapheresis. I only regret that the results didn’t last longer for me. Accepting that I am now living with secondary-progressive Multiple Sclerosis is tough sometimes, but I still have hope for my future.