Self-Assessment of Multiple Sclerosis Symptoms

Self-Assessment of Multiple Sclerosis Symptoms Image

A steady worsening of multiple sclerosis symptoms over time is a sign of disease progression. Read about the early signs of MS and progression. Multiple sclerosis (MS) occurs when your immune system malfunctions and attacks the fatty tissue (myelin) that insulates nerve fibers within your brain, spinal cord, and eyes.Since myelin ensures the rapid and efficient transmission of signals among

Multiple sclerosis (MS) occurs when your immune system malfunctions and attacks the fatty tissue (myelin) that insulates nerve fibers within your brain, spinal cord, and eyes.

Since myelin ensures the rapid and efficient transmission of signals among nerve cells, when it's damaged, nerve signaling is impaired. This may lead to various symptoms, including fatigue, blurry vision, pain, weakness, and numbness.

The vast majority of patients with MS initially experience a relapsing-remitting course. They experience "relapses" or flare-ups of new or worsening neurologic symptoms followed by periods of partial or complete symptom recovery ("remission").

Most patients with relapsing-remitting MS (RRMS) eventually transition to a progressive form of the disease where their symptoms slowly worsen over time, and they become more and more disabled.

In this article, you'll learn about the common symptoms associated with early MS. You'll also learn about possible signs of an MS relapse and whether your disease may be progressing.

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First Symptoms of Multiple Sclerosis

Even though the symptoms of MS are highly variable, inflammation of one of your two optic nerves—what's known as optic neuritis—is a common first manifestation of MS.

Your optic nerve is a cranial nerve that relays messages to the brain about what the eye sees. When the myelin surrounding the optic nerve is damaged, signals related to sight are interrupted.

The common symptoms of optic neuritis include eye pain, blurry vision, and headache. In some patients, partial or complete vision loss may occur.

While not an exhaustive list, other common, early MS symptoms include:

Commonly Misdiagnosed

Due to the many possible early symptoms of MS, and the fact they can mimic those of other health conditions, patients may go undiagnosed for years.

Signs of an MS Flare-Up

A flare-up or relapse occurs when a patient develops new neurologic symptoms or their old symptoms worsen. The exact symptoms that develop depend on what nerve signaling pathway is being attacked.

Symptoms of a flare-up may last days, weeks, or even months before they "remit" or get better. Some patients in remission will feel back to themselves, as they did prior to their flare-up. However, others may not recover completely and continue to experience ongoing symptoms.

Determining whether or not you are having a relapse can be tricky. Some relapses are more noticeable than others, as in the case of blurry vision with optic neuritis. Other relapses may be more subtle, such as feeling more tired or off balance.

Confirmation of Relapse

Relapses can only be confirmed by detecting one or more enhancing lesions on a magnetic resonance imaging (MRI) scan of your brain or spinal cord. These are areas that had active inflammation within the past couple of months.

Sometimes what you think is an MS flare-up is really a pseudo-exacerbation or pseudo-relapse. A pseudo-relapse is the temporary worsening of symptoms caused by external triggers, like infection, heat, or stress.

With a pseudo-exacerbation, there is no MS-related inflammation going on, and as soon as you remove the external trigger, the symptoms resolve.

When to Call Your Doctor

Call your doctor if you are experiencing new or recurring symptoms for at least 24 hours, and there is no obvious external trigger like being overheated or having a fever.

An exception would be if your symptoms have not been present for 24 hours, but they are serious or severe, like being so weak you cannot walk. In this case, call your doctor right away or go to your nearest emergency room.

Relapse and Remission to Progression

The majority of patients with relapsing-remitting MS eventually shift to a progressive form of the disease called secondary progressive MS (SPMS). With SPMS, symptoms steadily worsen over time. Relapses may still occur, but not very often.

While MS progression varies from person to person and is unpredictable, up to 90% of patients will experience the onset of SPMS within 25 years of being diagnosed with MS.

Keep in Mind

Secondary progressive MS is different from primary progressive MS, or PPMS. Patients with primary progressive MS have worsening neurologic symptoms from the onset of their disease and never experience relapses or remissions.

Assessing Disease Progression

Since the shift from a relapsing-remitting course to a more progressive one is a gradual process, doctors cannot always determine exactly when the transition is happening.

As such, to confirm this shift, doctors use many different strategies. These include:

Doctors also carefully evaluate your MS symptoms and how they have evolved or possibly worsened over time. As they assess your symptoms, they usually consider a timeline of six months to one to two years.

Fatigue

MS fatigue, also called lassitude, is very common and is more than feeling tired or sleepy. Patients often describe a debilitating physical and mental exhaustion that is not relieved by rest and tends to worsen throughout the day.

While sometimes difficult to evaluate, worsening fatigue over a period of at least one year is a key indicator that a person's disease is progressing.

Vision Problems

Vision problems, like blurry vision or double vision, are common first symptoms of MS for many people. As MS disease progresses, the continued damage or loss of the protective coating around the nerves controlling sight may lead to permanent partial or total blindness in one or both eyes.

Mobility Issues

Many people with MS experience mobility problems at some point during their disease. These problems stem from damage to nerve pathways involved in balance and coordination, vision, muscle strength, and sensation.

A slow, gradual impaired ability to walk, especially if you need to use a mobility-assistive device like a cane, is a big clue that your disease may have entered the progressive phase.

Pain

Pain can occur at any time with MS and tends to be a rather complex symptom to evaluate since there are different types and causes.

For instance, mild to severe neuropathic pain from damaged nerve fibers may occur in MS causing burning, tingling, vibrating, itching, squeezing, or other abnormal sensations.

Patients with MS may also experience musculoskeletal pain stemming from spasticity, muscle weakness, or walking and balance difficulties.  

Worsening Pain

Pain that steadily worsens after six months to a year or so from when it started may be a sign of disease progression.

Depression and Emotional Changes

Depression is common in MS and is associated with deep, persistent sadness and a loss of interest in activities you once enjoyed.

Depression in MS can occur at any time in the course of the disease. Patients with MS who are more disabled or in the progressive phase are not necessarily more likely to be depressed than those in the relapsing-remitting phase.

Pseudobulbar affect (PBA) which is characterized by outbursts of exaggerated crying or laughter is also seen in MS. Unlike depression, PBA is associated with greater disease severity in MS and is more common in progressive than relapsing-remitting MS.

Bladder and Bowel Issues

Bladder and bowel issues may appear throughout the course of your MS. Symptoms that are slowly worsening may be a sign of progression.

Bladder dysfunction is common in MS and symptoms vary by the extent and location of the damaged nerve pathways.

Typical symptoms include:

  • Nocturia: You have to urinate frequently, often at night.
  • Urgency: You feel like you have to urinate right away.
  • Hesitancy: You have trouble starting urination or maintaining a steady stream.
  • Incontinence: You cannot prevent urine from leaving your bladder.

Bowel problems are also common in MS, especially constipation, which can be exacerbated by other MS-related fatigue and walking difficulties. Constipation can also aggravate MS spasticity and contribute to the loss of control of your bowels (fecal incontinence).

Summary

Most patients with MS initially experience a relapsing-remitting course where symptoms flare up and then improve or go away. This is followed by a progressive form of the disease where symptoms slowly worsen, and disability accumulates. Assessing your own MS symptoms and how they have changed over time may be a clue that your disease is progressing.

A Word From Verywell

The unpredictable ebbs and flows of living with a disease like MS can be overwhelming. So while it's a good idea to periodically evaluate how you are feeling in terms of your MS, try not to let it consume your life.

Instead, focus your energy on engaging in overall healthy lifestyle habits, including taking your medication as prescribed. Remember to also be kind to yourself along the way and seek out support from loved ones or a support group.

Frequently Asked Questions

  • What are usually the first signs of MS?

    Early signs of MS may include blurry or double vision, dizziness, balance issues, fatigue, and/or abnormal sensations like numbness and tingling.

  • Does MS progressively get worse?

    MS is considered a progressive disease, meaning that neurologic function worsens over time. The timeline for this progression, however, is unique for each person.

  • How do you know if your MS is getting worse?

    A clue that your disease may be progressing is if you are experiencing a gradual worsening of your symptoms and becoming more and more disabled over time.

  • Can you live a long life with MS?

    Yes. Even though a research study from 2017 found a seven-year shorter life expectancy for those with MS compared to the general population, the study investigators did note a rise in survival in MS over time. This shrinking gap may be due to the advancement of disease-modifying treatments (DMTs). When started early, DMTs can slow MS progression.

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