Understanding the Four Types of MS
If you’ve just been diagnosed with multiple sclerosis (MS), it can be overwhelming. Learning about the various types you may have, the treatments and the prognosis takes time. Below you’ll find a description of the types of MS, along with a short description of the treatments available.
MS can be categorized into four types, with the name of each type describing how it treats the body. Each type can also be mild, moderate or severe.
Symptoms of MS
Before receiving a diagnosis, you probably noted a laundry list of symptoms that didn’t make a lot of sense. These MS symptoms may have included the following:
- Prolonged double vision and loss of vision (partial or complete); loss of vision typically occurs in one eye at a time
- Tingling or pain throughout the body
- Numbness in the limbs, typically on one side of the body
- Problems with bladder or bowel function
- Slurred speech
- Tremors or unsteady gait
These symptoms can all easily be associated with other serious health conditions; this may be why testing for MS is required to make sure an accurate diagnosis is made.
The Different Types of MS
There are four main types of MS:
- Clinically Isolated Syndrome (CIS)
- Primary-Progressive MS (PPMS)
- Relapsing-Remitting MS (RRMS)
- Secondary-Progressive MS (SPMS)
When reviewing different types of MS, it is important to remember that MS is an unpredictable disease and it varies significantly from person to person. Also, there are other, more rare types of MS, but these primary types provide a fairly comprehensive view of what disease courses MS may take in our lives.
Clinically Isolated Syndrome (CIS)
Though Clinically Isolated Syndrome (CIS) is considered to be the first of the MS types, it differs from MS in that it involves only a first episode (or single incident) of symptoms.
To be diagnosed with CIS, the symptom(s) must be caused by the same process found in MS – inflammation or demyelination in the central nervous system. The symptom(s) also must last for over 24 hours.
The chances of CIS leading to other types of MS varies anywhere from 20% to 80%, depending upon whether brain lesions consistent with MS are found via MRI. If two areas of damage to the central nervous system are found, and they have occurred at different times, or there is an occurrence of a second attack, a diagnosis of MS will most likely follow.
The National MS Society (NMSS) describes CIS as “two to three times more common in women than men. Seventy percent of people diagnosed with CIS are between the ages of 20 and 40 years (average 30 years).”
Primary-Progressive MS (PPMS)
Primary-Progressive MS (PPMS) affects approximately 15% of people with MS. It is characterized by disabilities that begin to accumulate slowly right from its onset. There may be minor remissions, but they seldom occur and are often temporary.
The National MS Society (NMSS) states that PPMS “can be further characterized at different points in time as either active (with an occasional relapse and/or evidence of new MRI activity) or not active, as well as with progression (evidence of disease worsening on an objective measure of change over time, with or without relapse or new MRI activity) or without progression.”
People with Primary-Progressive MS will have more difficulties with walking and need more assistance with everyday activities. PPMS appears equally in men and women, and the median age of onset is 40 years.
Relapsing-Remitting MS (RRMS)
Relapsing-Remitting MS (RRMS) is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with it. People with RRMS go through unpredictable cycles of exacerbations and remissions where the disease does not progress.
Symptoms depend on the area of the brain or spinal cord that MS has damaged. Symptoms can come and go where others only appear once and never come back. No two people are alike in exacerbation duration, symptom experience, and intensity or the length and level of partiality in remissions.
The Multiple Sclerosis Association of America (MSAA) states “on average, with relapsing forms of MS, women are three times more likely than men to develop this disorder.” The median age of onset of RRMS is 30 years.
Secondary-Progressive MS (SPMS)
40% of Relapsing Remitting MSers transition into Secondary-Progressive MS (SPMS) 15 to 20 years after first being diagnosed. This is a more steadily progressive phase of MS characterized by nerve damage or loss in place of the inflammatory process seen in Relapsing-Remitting MS.
SPMS does not have symptoms that all over the board as in RRMS. SPMS symptoms slowly progress with or without relapses. If relapses do occur, they are usually temporary and do not entirely remit.
As with Primary Progressive MS, National MS Society (NMSS) states that SPMS “can be further characterized at different points in time as either active (with relapses and/or evidence of new MRI activity) or not active, as well as with progression (evidence of disease worsening on an objective measure of change over time, with or without relapses) or without progression.”
There is a fifth type of MS; this kind of MS exhibits symptoms once but never again. Benign MS occurs in about one-fifth of MS cases.
Treatment for MS
There is no cure or MS. Regardless of the staging of MS, the goal of treatment is to prevent disability, manage symptoms and speed up the recovery process from attacks. There are also quite a few medication options available that may slow progression of MS.
Treatment for Exacerbations
Corticosteroids and plasmapheresis are both used to during an MS flare-up.
- Corticosteroids decrease inflammation. This includes oral prednisone and IV methylprednisolone.
- Plasmapheresis removes the plasma from the blood. The blood is mixed with albumin and transfused back into the body. This is typically done if symptoms are new or not responding to steroids.
Treatments to Slow MS Progression
There are no medical therapies known to slow progression for the PPMS sufferer. RRMS sufferers have a quite a few options:
- Beta interferons are an injection that reduce the frequency and severity of relapses.
- Glatiramer acetate (Copaxone) is an injection that prevents the immune system from attacking the myelin.
- Dimethyl fumarate (Tecfidera) is an oral medication that reduces the amount of relapses.
- Fingolimod (Gilenya) is also an oral medication that reduces the amount of relapses.
Treatments to Manage Symptoms
A large part of MS treatment is managing symptoms.
Physical therapy may help to strengthen and stretch muscles. In addition, the physical therapist may be able to show you how to perform your ADLs easier.
Muscle relaxants can be helpful if you suffer from muscle spasms and muscle stiffness. Other oral medications may be used depending on the type of symptoms noted, such as antidepressants for depression.
Making Sense of the Different Types of MS
Do You Have Any Questions?
I remember my first follow up visit after being told my diagnosis of MS was confirmed, only slightly and I remember entering the office with conviction. I wanted to know what we were going to do about all of this. “Now,” I said to myself. “We will get down to brass tacks and handle this.”
My neurologist was kind, patient and open to welcoming me into the fold in any manner that seemed best for me. It did not matter. I felt overwhelmed, and my mind was racing.
I recall explanations of the myriad of symptoms and issues I may experience. There was a brief discussion of medications to be considered and specialists (I’d never even heard of) that I might need to see.
I was given a review of my brain MRI. I gazed at the gray image full of dots and blobs as my doctor’s mouse arrow zipped from one area to another. This experience seemed more like I was being briefed on maneuvers for interstellar space battle than reviewing my current state of health.
In the midst of all of this, I took part in what felt a bit like a cross between a sobriety test and a kindergarten game. With arms outstretched, I found my nose, I patted my thighs and touched finger-tip to finger-tip. Then I was off to walk "the neurologists’ catwalk," down the hall and back, to check my stride and time.
I left trying to recall all the terms and phrases I had just been introduced to. I tried to remember something about the kind of MS I had.
My doctor had undoubtedly gone over this many times, calmly and plainly. I knew it was something with words starting with the letter "R”. Well, there was plenty of reading material tucked under my arm that would explain it all again. I was in a fog. I could not this blame it on MS directly.
This was just a lot to process.
When I returned home, I stared at the packets of material on my kitchen table. “How much did I really want to know about MS,” I wondered? “Well,” I decided. “If MS is going to be a part of me, I am going to have to get to know it.”
I took a deep breath. I was afraid for my future, however, burying my head in the sand was not the answer. It was time to figure out where I was at in all of this.
Like so many of us MSers, by the time we are diagnosed we are briefed pretty well on what MS is a disease. What I wanted to do was to break down the terminologies so I could better understand the course of the disease and how I related to it all.
If you find yourself experiencing a new symptom or one or more old symptoms worsens or returns for at least 24 hours, this is known as an MS relapse. I was happy to learn that relapses are also called flare-ups, exacerbations or attacks.
The fact that all these words are somewhat interchangeable cleared lots of confusion right off my plate. These words are thrown around quite a bit in our world, and as a newcomer, I wasn’t sure about what they all meant.
Primarily, relapses are identified as such when they occur 30 days after any previous relapse. They can last anywhere from 24 hours to a few days, weeks or months. Relapses can have multiple symptoms with different levels of severity. They can be subtle, or they can be extreme, severely affecting daily activity.
In regards to MS, the word remission refers to a period where a person goes symptom-free or returns to the state of health they were in before the last relapse.
A remission can last for weeks, months, or even years. Unlike the use of the word remission in other maladies, the word remission never means MS has gone away, or there are no signs of it in the body. MS is a lifelong disease.
Longevity and Permanence
With the more frequently used terms identified and defined, it was time to take a look at the stages or types of MS. Upon first glance; the definitions were dizzying.
I got caught in a loop of reading and re-reading things like:
- Symptoms flare up and eventually go away then come back again, or never come back again
- New symptoms flare up; old symptoms get worse or better
- Old symptom flare up and never seem to go away
- Symptoms stay and only get worse over time, with no break
It is no wonder there are a lot of questions about the progression of MS and what it all means to us.
I felt at this point that I had given myself enough of an education to where I could ease back a bit. Even though I had a better understanding of the nature of the main types and phases of MS, the best I could do now was to keep records of my relapses, symptoms, and remissions.
The more organized the information I could share with my neurologist, the better chance of suppressing progression while at the same time, improving the quality of my days. There is no way to know where MS is going, but at least now, even the surprises will not be as ‘surprising.'
The next item on my agenda was to relax a bit when reviewing my MRI scans. I wanted to understand what these images indicated, and I wanted to follow my doctors mouse-arrow across the images because they were maps for handling my health – and not maps for the intergalactic warfare they did resemble.
I am still working on this.