I have been living with MS for the last 30 years. Here is my personal story about the types of MS I have experienced during that time. For the first 15 years, I had Relapsing/Remitting MS (RRMS), and after that the type was Secondary Progressive (SPMS). Although MS is a devastating disease, it has helped me realize how grateful I am for so many things.
Twenty years ago, I was diagnosed with MS. Before my diagnosis, I lived with 10 years of unexplained episodes from the first sign when my knee was numb to my next symptom when I began to lose control of my right hand. Symptoms showed up more frequently, still coming and going for no known reason. It was alarming, frustrating, and confusing because I did not know why this was happening to me, and I never knew what would happen next or when.
I was a single mother with two boys, and I was lucky they were teens before my symptoms were too bad. My kids helped me keep going and even laugh. In my search for what was wrong, I met a physical therapist, and after watching me walk, she referred me to a neurologist who specialized in MS research.
My first MRI showed more than two lesions. That and my history of symptoms was enough for a definite diagnosis. I heard both terms, Probable and Definite MS, within minutes of each other. When my doctor told me I had MS, there was no mention of any specific type. Now that I know more about MS than I did in 1989, I know my MS was Relapsing/Remitting.
Relapsing/Remitting MS (RRMS)
Most people, including me, who are diagnosed with MS have the Relapsing/Remitting type (between 55% - 85%). I did not know that until much later.
Before the early 1990s, there were no disease-modifying drugs for MS, and when medication was first available, it was offered only on a lottery basis. Most MSers like me were given treatment for specific symptoms when the symptoms were active, and no medicine otherwise. That's just the way it was.
My life continued much as it had before - something would go wrong, and then it would be all right. It was barely more than five years after diagnosis when I began to notice after an exacerbation that I did not recover as quickly nor completely as before. I also noticed some problems with my legs and feet which began to be aggravated without a flare. It was not the same as when an attack was followed by recovery.
Secondary Progressive MS (SPMS)
My MS was getting worse, but there were no clear markers leading to the degeneration. RRMS had evolved to the next type, Secondary Progressive MS. Of MSers, 30% - 40% have SPMS at any given time.
My disease advanced faster than for most MSers. Some do not evolve from RRMS to SPMS for 40 years, but for me it was about 15 years. My doctor and I knew it was Secondary Progressive MS by the mid-1990's.
My legs and feet had stopped working, so I was in a wheelchair most of the time. I had an Amigo scooter, a lift on the back of my car, and hand controls so I still drove to work. I worked in the American Airlines corporate headquarters until it became too difficult to drive that far daily. I began telecommuting, working at home most days with a computer linked to a global airline system, a fax and a speaker phone. I usually drove to the office only for status updates or other meetings.
In addition to projects at work, I made an effort to keep up my quality of life. For example, I regularly went to an inside pool, used a lift to get in and do my short exercise program. It was always so refreshing, and it reminded me I could still control my body, if only with the benefit of buoyancy in the water. Another exercise program was lift-ups, placing a hand on each wheelchair arm and pushing myself off the chair a number of times.
In my retirement I have good days and bad days, good and bad weeks, and sometimes just a trying afternoon, but most of it is good. My life has gone through drastic changes since my first symptoms, but I find time and space for work, play and joy.
It is a chilling prospect to think of possible symptoms and how serious they might be, but it is comforting that mine are not getting worse. It is important for all of us to keep a positive attitude, be grateful for what we have, delight in our family, and keep a sense of humor; it makes a world of difference. This is not the life I expected in my 60s, but I am happy and there is always hope.
This is my story. I would like to hear about your stories. What is your type?
Notes and Links:
It happens that just a few years after my MS was confirmed, Dr. Ian McDonald published the first version of his MS diagnosis criteria that streamlined the diagnosis procedure.
What's Your Type?
Major MS Types & Prevalence