Life with MS

My Story: Taking Charge of Relapses

By Cherie C. Binns, RN, BS, MSCN
Relapses with MS can be frightening! We think, “Oh, no! Not another one. Will this be the one that stops me from working or puts me in a wheelchair?” I have found that getting on effective medication and staying on it is the best way to avoid relapses, and slow or prevent further progression of symptoms.
My first symptoms appeared in my early twenties, but I was not diagnosed until my early forties. (I am now in my mid-sixties.) We did not have anything to treat multiple sclerosis until the first disease-modifying therapy became available in 1993. I was diagnosed in 1994. At that time, it was thought that my mild form of MS did not warrant going on medication because I was still walking, even though I believe I had a series of symptoms and relapses for 20 years before being diagnosed.
During the next six years, my MS progressed to the point where I was using a scooter all the time outside and two canes inside. I found a new MS neurologist who started treating me, which led to some improvement in my symptoms and function. Then I discovered the Multiple Sclerosis Foundation’s annual cruise, now known as MS Focus at Sea. My husband, David, and I went on the cruise. Even though I had been a registered nurse for decades, on the cruise, I learned that there is always something new to learn! My eyes were opened. My brain was challenged and expanded. I had fun with the presentations and the information we were given. And I learned a lot. More than that, I felt empowered for the first time ever and knew that I could take this newly acquired information and put it to use to prevent more damage to my central nervous system.
 A couple of weeks after I got home from the cruise, I had my regular appointment with my neurologist. He asked how I was doing and I replied, “Not so great.” I asked for a new medication that I had heard about on the cruise and he was resistant to prescribing it because of possible side effects. So I asked him what the side effects of MS are. He looked puzzled. I went on saying, “They are different for everyone, but for me those side effects keep me house-bound because I can no longer see well enough to drive, and I need my scooter when I leave the house. I need to catheterize to fully empty my bladder. I am depressed, and often think life would be better without me in it. At night, I wake up every few minutes with pain in my hip. Then I awake exhausted every day. Those are my side effects of MS.” I left with a prescription for the medication I had requested.
 Four months later, I went back for another visit. My doctor did not initially recognize me. I didn’t have my scooter; I was walking. I no longer needed to catheterize. A few months later, my neuro-ophthalmologist shook her head in wonder as she proclaimed that she did not know how or why, but I had recovered sight in both eyes and my visual field exam now showed only the original blind spot that was visible at the time of my diagnosis in 1994. Was it a specific medication that did this? I have to say it is not likely.
 I think what happened is that with a higher dose of medication, inflammation in the central nervous system was more effectively addressed, and as that happened I felt better. As I felt better, I moved more. I was no longer in survival mode, so was able to look at things like what I was eating. I didn’t need the energy-savings of using prepackaged food and could again plan and prepare a healthy meal. I was able to move with greater comfort so started working on the fact that I was very out of shape and moving tired me out more than it should.  
Medication brought about a decrease in central nervous system inflammation which quieted symptoms and led to me feeling generally better. I did not have to work so hard to do the very basic stuff to get through a day. I felt well enough to move more, to eat better, to take care of me more fully. There have been more medication changes as MS has evolved in the time since then. I continue to learn and apply what I am learning to be in the best health and shape that I can realistically obtain.