Secondary Progressive MS is the advanced course of Relapsing/Remitting MS. I recently talked about the different types of MS. Now I am looking at the characteristics of Progressive MS. As this series continues, I will discuss research and clinical trials, medications, “a day in the life,” and other topics relating to the progressive types of MS.
First, Let’s take a quick look at what it means to have Progressive or Chronic Progressive MS. Most MSers have Relapsing/Remitting MS (RRMS), so that is the type most people are likely to know a little about. Because the majority of MSers have RRMS, most information, including online articles and blogs, talks about RRMS. If a type is not specified, it is probably about RRMS. However, that leaves a void where Progressive MS is concerned. Because there is little information, many people do not know about Progressive MS, and that includes MSers.
What makes progressive types different? They are characterized by a gradual increase in loss of function due to a gradual worsening of symptoms rather than clear relapses. Further, there is little or no recovery in the form of remittance periods. The disease progresses toward disability. Symptoms are similar regardless of the type. It is the rate and intensity that differs. That is true of all types of Progressive MS.
Today the focus is on Secondary Progressive MS. This is the type of MS I have. I am discussing the characteristics of this type and telling a bit of my story. Next time the focus will be on the Primary Progressive and Progressive Relapsing types of MS.
Secondary Progressive MS (SPMS)
After a period of time with Relapsing/Remitting MS (RRMS), some MSers slip into a progressive form of MS. Because Relapsing/Remitting precedes this form, it is called Secondary Progressive. Secondary Progressive MS is simply the second phase of MS when the disease course evolves from relapses to a steady progression.
The time period between RRMS and SPMS varies from as short as two years, to as long as forty years. Ten years after having RRMS, about half have developed SPMS. After thirty years, that evolution has increased to 90%. At any given time, Secondary Progressive accounts for about 30% of all MSers.
There is nothing to say how long the transition to Progressive will take any individual, or if an MSer will escape the progressive route all together. Although anyone with RRMS can develop SPMS, men as well as people who develop RRMS at a later age are more likely to move into progressive soon after first showing signs of MS. It is believed, but not yet proven, that the disease-modifying drugs available today may delay that transition. That sounds promising to me!
Some MSers believe they know progressive has set in when functional damage continues without any recognizable relapse. There is often new or increased cognitive difficulty, as well as problems walking, and new or more intense symptoms continuing without acute attacks. It is time to talk to the neurologist.
Neurologists can tell if an MSer has slipped from RRMS into SPMS using a neurological exam, evoked potential tests, and other tools including these:
MRI - The MRI shows structural differences in lesions in RRMS and SPMS.
- Expanded Disability Status Scale (EDSS) - This scale rates RRMS at four or under and SPMS usually over six. Those numbers also correlate with MSers who are and are not ambulatory, based on distance walked without aid.
- Cerebrospinal fluid – The fluid that cushions the brain and is found in the central column of the spinal cord, differs between the two groups. RRMS score positive, and SPMS score negative.
Unlike my early MS days, many MSers today have regular MRIs as a matter of course, so I imagine this is now a normal topic. If not, maybe it should be. For me it was more than a decade from my first symptom to the beginning of the progression. At that time, I had not even heard of Progressive MS, so I thought the disease was just running its normal course, and, in fact, it was.
My first symptom lasted a few hours or a couple of days, and then it went away, and it came back again until eventually, it didn’t come back. Each new symptom followed suit, but between symptom outbreaks, I felt just fine – classic Relapsing/Remitting MS. However with time, things changed. Symptoms did not completely disappear and they actually became worse without a relapse to mark the change; I used a cane full-time for balance and fatigue set in.
I did not understand that I was easing into an advanced phase. I did not recognize a specific time when one phase became another. There was a period of time when I had both relapses and changes without relapses, akin to Progressive/Relapsing. I heard the labels Primary and Secondary but did not know for sure which, if either, applied to me until I brought up the subject with my neurologist. I was an experienced MSer. I thought I was educated about the disease that was a big part of my life, but I did not know about the progressive phase until it was part of my life.
As I began learning to live with SPMS, I knew only time would tell if a symptom was worse, and it would take more time to determine the degree of the problem. I have good days and bad days, good and bad weeks, and sometimes just a trying afternoon. But I also have accepted this new life and have learned to appreciate those good days and good weeks. After about fifteen years with Secondary Progressive MS, my life has gone through drastic changes, but I still find time and space for joy.
Those of us with SPMS have a chronic condition, and it is important for us to take care of ourselves and track our physical, mental, and emotional progression. Although there are benchmarks to determine if progression has set in, there is no standard progression prototype. One person’s progression does not mirror another’s progression. MS a highly individual disease.
It is a chilling prospect thinking of all the symptoms and how bad they can be, and facing increasing disability that cannot be controlled. However, it is not so chilling if we also attend to our quality of life. That is important for all of us – I know it is for me. There are always going to be factors affecting my quality of life that I cannot control. I hope I can maintain a positive attitude; it makes a world of difference. One of my favorite quotes is particularly applicable here:
“A happy person is not a person in a certain set of circumstances,
but rather a person with a certain set of attitudes.” ~ Hugh Downs
My particular progression is very slow, and I am grateful for that. This is my story and there are many others, some progressing just as slowly, some faster, some not starting as soon. I would like to hear from others about their stories.
Next time I’ll talk in more detail about Primary Progressive MS (PPMS.)
Evoked Potential Tests - WebMD.