Few people know about Primary Progressive MS (PPMS) because so few people have it. I am going to talk today about Primary Progressive MS (PPMS) and compare this type of MS with Relapsing/Remitting MS (RRMS), the most common type. This article is presented in two parts.
Part I is an introduction presenting a “big picture” of the difference between the little-known PPMS and the common, well-known RRMS. Part II is more descriptive, including treatment and research.
I am not doctor, but I feel compelled to discuss this topic after a young woman who was diagnosed with PPMS asked, “Why doesn't anyone ever talk about PPMS?” I'm here to tell you that more people are talking about it and acting on it now.
There is more MS information available today than ever before, but most of that information is about RRMS. The vast majority of people with MS have the RRMS type. Because there is not as much information or activity about PPMS and the other MS types, people living with them sometimes feel simply left out in the cold.
The following table represents a comparison of MS types by their occurrence. Percentages are approximate. The types may evolve from one to another, are diagnosed in regions where labels have not yet been standardized, or may not be diagnosed at all.
Metrics of MS types by occurrence within MS population
Just as we do not know why we get MS, little or nothing is known about why we develop one type or another. Why do some people with Relapsing Remitting MS never move on to Secondary Progressive? Why do some people experience benign periods? Also, other conditions may mimic MS so they are often difficult to distinguish and make diagnosis more difficult.
MS is usually diagnosed for people between 20 - 50 years old, although we know it ranges from young babies to very old people. PPMS, however, is not usually identified in patients until their late 30s or 40s.
Life expectancy for someone with MS has improved over the last 80 years. In 1936, only 8% of people with MS were expected to live 20 years beyond diagnosis. Today anyone with MS is expected to live about as long as a non-affected person; statistics say perhaps just 5-7 years less.
MS diagnosis often takes months or even years following unexplained events such as numbness or interrupted vision.
Diagnosis is still a long process, however, consisting of several steps done over time. These steps usually include the following:
- Neurological history, episodesor attacks
- Primary MRI, or a series of spinal MRIs
- Evoked potentials tests indicating a slowing in nerve conduction speeds
- A spinal tap showing oligoclonal banding in the spinal fluid
- Eliminate similar conditions
Leading to an RRMS diagnosis, I had several episodes, each different, each treated by a different doctor. There was no one to identify the pattern as MS, until I was lucky enough to find the right neurologist who confirmed my diagnosis. This story is not unique to me; rather, it is similar to 85% of people diagnosed with MS.