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: