What Type Is Your MS?

Multiple Sclerosis has four major forms. To wit:

1. Clinically Isolated Syndrome

2. Relapsing/Remitting (RRMS)

3. Primary Progressive (PPMS)

4. Secondary Progressive (SPMS)

At the end of the day, I am not a neurologist. I can’t speak on this in any authoritative way, but what I can do is speak to you about these in the words and from the understanding of an average person so that the various types may make a little sense for you.

Clinically Isolated Syndrome – this is kind of a “warning shot across the bow” version. It usually shows up as a single, transient symptom that may clear up completely (but can be “multifocal”, which is fancy doctor talk for “more than one symptom”). These are going to be things like a sensation deficit in your extremities, an interruption of your eyesight, or other expression based upon where the damage/scarring has occurred in your brain. CIS can continue on in to full-blown MS but it is not guaranteed to do so. In order for a CIS diagnosis to be converted to a full-blown MS diagnosis, MRI brain imaging will have to show additional damage following the initial symptom. This is the kind that your friend had who “got better”, former boss.

Relapsing/Remitting – This is the kind that I have. When your disease flares up and causes new damage and, consequently, new symptoms, it is called an exacerbation. With the benefit of hindsight, my first expression of any disease was in 2004. I experienced a low-grade, temporary loss of sensation in my left leg. It was no big deal outside of being a strange curiosity that I could not feel pointy objects touching my leg. Oddly, at this time in my life, I was not in the habit of poking my left leg with pointy objects, so it was very much a case of “huh.” I did ask around if anyone had ever experienced the like at the time… but no one had and so it remained in that curious “huh” realm.

A thing that you would have to ask a neurologist is how one tells the difference between very early RRMS and CIS. My second symptom would not show up until 2011, my diagnosis year, a full 7 years after the initial sensation deficit. This is an extremely common length of time from first symptom to second exacerbation. RRMS, as the name implies, is characterized by time during which the body does more damage to the nervous system alternating with time in which the body is not doing more damage. It is of very little use to know specifically (one can’t just think to their self “stop attacking your myelin, yo”). In my experience, the body takes some time with how it is going to sort out a new round of damage, so the active disease time (deteriorating time, I suppose) feels longer as you lose this or that and feel a symptom getting more prevalent. As I mentioned, my primary diagnosing symptom was a condition called “drop foot” in my left foot (drop foot is a symptom frequently experienced by stroke victims). In my case, as is fairly common, heat and physical effort will cause a symptom to become more prominent. Working at a job that required some amount of activity and physical effort at the time, the fact that my left toe would frequently get caught in the ground mid-step was… inconvenient.

Initially, I sought care from a chiropractor, thinking it might have been based in the muscles somehow. She attempted several things, none of which worked. Coincidentally, she happened to have MS, so she identified my symptom as a potential expression of MS and suggested I see her neurologist. I scoffed at the idea, but followed through with an appointment, and the rest is history. I’ll touch on this in the near future when I discuss disease treatments.

RRMS, if left to itself to run rampant, can shift into Secondary Progressive MS. It is kind of what it sounds like… the body begins to do continual damage to itself, and the physical condition of the person will exhibit a steady decline. PPMS (without the RRMS step) and SPMS are likely the forms and outcomes that you pictured when you heard the term MS. Wheelchairs and terminal episodes are more closely related to these tracks.

It is going to feel as though I am glossing over the progressive forms of this disease… and frankly I am. When I discuss drug therapies, you may see why. At this point, there is little reason to familiarize myself with any specific “worst-case” scenario… well, that and the fact that the PPMS boat has long since sailed. Thankfully. At any rate, come back tomorrow and read about my treatment history and how I came to be in the literal very best place that I can be at this point. It’s a little more interesting than you might think. Actually, the most interesting part is a stand-alone post of its own… but it still will be interesting. Thanks for coming by and reading, and apologies if you have come by looking for more explanation of the progressive forms of this disease. It’s a little by design. As humans we don’t like looking disability in the face. I’ll explain more in the drug post, but until I have to (which is probably never), I won’t look under that stone. I’ll just stay here now and do the best that I can.