Living with Multiple Sclerosis

Living with Multiple Sclerosis

Imagine you’ve had a fully functioning body for 35+ years and then one day, something doesn’t feel right. You lose sensation on one side; your vision blurs and you feel dizzy. It must be a pinched nerve, you assume. After a while, your body goes back to its normal state, and you forget about it. A few months on, it happens again, and a few months later, once more.

It may be surprising to you to learn that multiple sclerosis (MS) does not usually come on in childhood. In fact, most cases are diagnosed between the ages of 20 and 40. If you’ve just discovered an MS diagnosis in yourself or someone close to you, this can be a scary time of delving into the unknown.

So, we’re going to break down the disease to help you understand it, manage it and learn to thrive alongside it – or help someone else do so.

In this article, we will cover:

  • What is multiple sclerosis?
  • What causes MS?
  • What types of MS are there?
  • What are the symptoms of MS?
  • How is MS diagnosed?
  • What treatments are there for MS?
  • What lifestyle changes can you make to cope with MS?

Let’s dive in.

What is multiple sclerosis?

Multiple sclerosis is a chronic and progressive autoimmune disorder that affects the brain, optic nerve, and spinal cord. The body’s immune system mistakenly attacks the fatty myelin sheaths that form a protective coating around neurons.

This process of demyelination causes inflammation, leaves the nerves exposed and causes them to develop scars, which disrupt the electrical impulses that the brain sends to communicate with the body so that they can’t travel along the nerves as easily.

MS can come on in attacks or be silently active on your myelin in the background. More scars or lesions form with each bout of MS. The word sclerosis means scars, so MS is essentially multiple scars on the nerves. These get worse over time, which is why it’s seen as a progressive disease.

Medications and therapies have been shown to slow down the progression, alter its course and reduce disability, but there is currently no cure.

The scars and subsequent communication problems they cause between neurons and the brain can cause motor problems, vision impairments, pain, memory and cognitive issues and various other challenges.

What causes MS?

There’s no one cause. Sometimes genetic factors play a role. In other cases, environmental factors are the culprit.

Women are three times more likely to develop MS than men and in particular, white women of Northern European descent. A lack of Vitamin D is also believed to be a contributing factor.

What types of MS are there?

There are three main types of MS.

The first is RRMS – relapsing-remitting MS

Around 85% of people with MS are initially diagnosed with this type. This is when the disease flares up and you have attacks or relapses with symptoms that then dissipate either partially or entirely when you go into remission.

The second is SPMS – secondary progressive MS

People who started with RRMS may develop SPMS. This is where the relapses may or may not disappear, but your disability still worsens over time.

The third is PPMS – primary progressive MS

This affects about 15% of people with MS and is where few or no relapses occur, but symptoms get worse from the start and continue to worsen over time.

What are the symptoms of MS?

The symptoms vary from person to person and in severity and frequency.

Some symptoms include:

  • Visual issues – optic neuritis (painful eye movement and/or temporary loss of vision), double vision, blurred vision, a black spot in the field of vision (blind spots), and nystagmus (involuntary eye movements).
  • Tremor – this can either be a result of trying to do a specific action or resting tremor when the body is relaxed.
  • Sexual issues – inability to maintain an erection or achieve orgasm in men, or a loss of sexual desire, sensations, ability to achieve orgasm and a reduction in lubrication in women.
  • Dizziness or vertigo.
  • Anxiety – not the type brought on by a diagnosis but rather when lesions damage specific nerves in the brain.
  • Problems with balance or walking.
  • Cognitive issues such as memory loss or inability to concentrate.
  • Trouble swallowing.
  • Numbness, tingling, burning pain.

How is MS diagnosed?

Because the symptoms of MS can be apparent in a number of different diseases and disorders, there are a few things that need to be observed over time for a diagnosis of MS to be confirmed. Often, the McDonald criteria are followed in diagnosing MS.

This requires two things:

  • Evidence that the damage to the central nervous system is getting worse in multiple locations in the body, meaning that an MRI (magnetic resonance imaging) scan shows multiple lesions occurring in different parts of the body.
  • Evidence that the damage to the central nervous system is getting worse over time with two or more relapses, or evidence of new active lesions alongside old inactive ones. Doctors may also do a lumbar puncture to study cerebrospinal fluid and rule out other diseases. If oligoclonal bands (bands of antibodies) are found in the spinal fluid, this shows the body’s immune system was attacking itself in the past and is evidence of MS.

What treatments are there for MS?

There are various treatments to slow the progression, change the course of the disease and reduce disability and symptoms. These are usually administered orally, as intravenous infusions or with injections.

Common treatments include:

  • Disease-modifying therapies (DMTs) that target the body’s immune system to modify it so that it reduces its attack on the central nervous system.
  • Corticosteroids that reduce inflammation and therefore symptoms during a relapse.
  • Other medications that are used to manage symptoms.

Many clinicians agree that the most important thing is to diagnose accurately and start treatment as soon as possible. This is because every relapse hits the central nervous system hard and even when there are no symptoms, the disease may be actively doing damage in the background. A delay in treatment could lead to greater disability later on in life.

You can also get rehabilitative treatments, such as physiotherapy or occupational therapy, to help with muscular dysfunction and stiffness. Your doctor and neurologist will be able to advise you on the best combination of treatments for you.

What lifestyle changes can you make to cope with MS?

In addition to medical treatment, there are a few lifestyle changes you can make to help you in your journey with MS.

  • Smoking has been shown to be a risk factor for MS as well as for the progression of the disease, so quitting smoking is strongly recommended.
  • Exercise and stretching can help with physical impairments, relieve stiff muscles, and improve mental well-being.
  • Eating a healthy diet can reduce your risk of other comorbidities like diabetes, hypertension, and heart disease.
  • Getting enough Vitamin D may slow the progression of the disease. Studies have shown that low Vitamin D levels have been associated with MS onset and progress.
  • Seeking help for your mental health from a psychologist or psychiatrist is also an important step in dealing with your diagnosis and learning to thrive alongside it.

The MS Readathon is happening for the month of August, where children read as many books as possible to raise funds for support services vital to families living with MS.

If you’d like to donate, read a book, or get involved, head over to their site.

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