Rose is a rose is a rose." ~ Gertrude Stein
A rose is a rose, but can we say MS is MS? After all, MS affects the autoimmune central nervous system of every person who has MS. But after that it gets a bit murky.
Just as a rose is identified by characteristics such as color, size and fragrance, so is each person's MS symptoms unique based on symptom clusters, reactions, time lines, the course of the disease and any number of other idiosyncrasies. So yes, MS is MS, but not exactly. There are different categories or types of MS that provide us with some degree of understanding why symptoms of people with MS differ so greatly.
It is sometimes difficult to know if a new symptom is because of MS, or if it is something totally unrelated. It is at least as difficult to determine what type of MS applies to us at any given time. Just as symptoms may come and go, we may evolve from one type to another as a regular course of this confusing disease. Most of us eventually get a handle on our symptoms, but many of us do not know about types, and perhaps there is good reason.
Even though there are four basic types typically recognized by the international medical community, there are more subtypes and labels. The same type may be called by different labels based on time. There are even a couple of conditions once considered to be MS that have since been determined to be separate diseases all together, although they are closely related. Who wouldn't be confused?
Lets look at the types and labels of MS, beginning with diagnosis:
This is a label many of us have heard. Probable MS is the first step of diagnosis, the common entrance for all other types.
MS is usually diagnosed only after two or more attacks, and two or more lesions found on an MRI over time, as described in the Revised McDonald Criteria. Before that criteria is satisfied, when MS is suspected, even strongly suspected, it is first labeled as Probable MS. After time, tests, and multiple attacks, the probable becomes definite, but that is only part of the answer.
When I was diagnosed, I was simply told I have MS. However, MS is not always just MS. There was still a question of type. MS may be RRMS, SPMS, PPMS, or PRMS.
The percentage numbers given do not add up to 100 because they are approximate and often reported inaccurately. Also, types evolve from one to another, they are mislabeled, misdiagnosed, or not diagnosed at all. Just as we do not know why we get MS, little or nothing is known about why we develop one type or another, or why some people with Relapsing MS never move on to Secondary Progressive, or why some people experience benign periods, or . . . well. you get the idea.
However, we do know the first step of diagnosis is Probable MS. After an undetermined amount of time and unpredictable events, when probable becomes definite, the question of MS Types begins.
Why do we need to know? If we know what type of MS we have, we have a better idea what to expect, especially as far as the course of the disease. We know about clinical trials studying our particular MS type and treatment options available to us, and those that are not. We know how to talk to the doctor, and we understand better when the doctor responds.