The Worst Form of Multiple Sclerosis (guest post)

*This is a guest post from Rebecca of GeriatricNursing.org*

Let’s start with a few questions I’d like to help answer.

  • What exactly is the worst form of multiple sclerosis?
  • What happens when you are diagnosed with multiple sclerosis?
  • When do people get multiple sclerosis?
  • How will my doctor diagnose MS?

For many people just familiarizing themselves with MS for the first time, their questions are either exactly these four, or questions very much like these four.

Given that MS has a reputation as an especially difficult disease to live with, it makes sense that many people are afraid when they first hear about a diagnosis, whether that diagnosis is for someone close to them or their own.

Multiple sclerosis is the leading cause of disability in active young adults, and as a result, is often thought of as especially traumatic—but most people don’t actually know what it is. So let’s start there: What is multiple sclerosis?

A Quick Explanation

Multiple sclerosis is a disease of the central nervous system, in which the nerves going to and from the brain are damaged as a result of inflammation. As a result of that damage, your body doesn’t get the signals it needs to perform as you would like or may expect.

Additionally, this nerve damage can result in bewildering symptoms, such as false sensations—including burning or tingling in your arms and legs, hands and feet—numbness, tightness in your chest, lost balance, slurred speech, even loss of bladder control.

The Types of MS

In particular, there are four main types of multiple sclerosis:

  • Relapsing-Remitting (RRMS)
  • Secondary-Progressive (SPMS)
  • Progressive-Relapsing (PRMS)
  • Primary-Progressive Multiple Sclerosis (PPMS)

Of the four types, relapsing-remitting is most common and primary-progress is most rare. Let’s look at each type a little more closely.

RRMS

In relapsing-remitting MS, patients may have acute attacks of one or more symptoms, which may last for a few days to several weeks, but will then have a complete or partial recovery of some if not all of the symptoms.

SPMS

Secondary progressive MS (SPMS) usually doesn’t develop until after a patient has had RRMS for at least several years, and is characterized by a deepening of symptoms and the beginning of disability as a result of those symptoms. Additionally, SPMS may not show the recovery common to RRMS.

PRMS

Like SPMS, progressive relapsing MS (PRMS) may well be characterized by the disability in which it results. Because it is a relapsing form, however, like RRMS, patients suffering from PRMS may show improvement between acute attacks. Most often, however, any recovery between acute attacks does not last, and disability brought on by MS continues to worsen over time.

PPMS

Fortunately primary progressive MS (PPMS) is the most rare of the four types, as it is also the most quickly debilitating, in that disability is present from the very beginning. If there are improvements between acute attacks, they are rare and short-lived. Instead, this form of MS is most noted for continually worsening symptoms.

Very Rare, Less Inflammation

Fortunately, as I noted earlier, PPMS is rare—only about 10% of people with MS have PPMS. More fortunately yet, fully 85% of MS patients suffer from one of the two relapsing forms of the disease, meaning they are not always afflicted by the symptoms of MS, and symptoms may even come and go with some rare frequency for such patients, meaning that they may for the most part be able to live a fairly normal life.

One of the ways in which PPMS is different from other forms of MS is that it shows far less inflammation in the brain and spinal cord as compared to the other forms when tested with MRIs. This is because as opposed to the inflammation contributing to symptoms in other forms, primary progressive MS shows far more early tissue damage and nerve destruction, thus contributing to the far more severe disability associated with this form of MS.

PPMS is also different from other forms of MS in that it is usually diagnosed later in life than other forms of MS. Whereas most forms of MS are diagnosed in early adulthood, between the ages of 20 and 40, PPMS is often diagnosed at later ages.

MS is Unpredictable

And this is part of what makes so treatment so variable, too: MS is unpredictable. For those diagnosed with MS, doctors are often incredibly reluctant to offer a prognosis of what might happen over that patient’s lifetime, because quite frankly, they don’t know.

For instance, if you are originally diagnosed with Relapsing Remitting MS (RRMS), you may stay that way for the rest of your life, or you may develop Secondary Progressive MS (SPMS)—though if you are going to develop SPMS, that usually happens within 10-15 years of the original RRMS diagnosis.

This is one of the many reasons why if you are diagnosed with any of the forms of MS, you will need to work closely with your doctors to develop a treatment plan that will work for you.

 

Multiple Sclerosis – An infographic by MS

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