Relapsing Multiple Sclerosis: When Your Symptoms Come Back Uninvited

Just when you think you’ve gotten your multiple sclerosis (MS) under control, suddenly your symptoms start roaring back again. Does this mean that life with MS is nothing but a vicious cycle of relapses?

It may feel that way at first, but once you have a better understanding of relapsing multiple sclerosis, you can not only prepare for your symptoms but manage them as well. 

What is relapsing MS?

Relapsing MS is the occurrence of new multiple sclerosis symptoms or the worsening of old ones. In short, it’s defined by the coming and going of symptoms, which is exactly what makes relapsing MS so unpredictable. While no symptom is ever “welcome,” there’s really no better descriptor for relapsing MS than the word “uninvited.”

For what it’s worth, relapsing MS is the most common type of multiple sclerosis (you’re not alone!). It also follows a distinctive pattern of symptom attacks (relapses), followed by recovery periods (remissions).

If you have MS, it’s important to learn which type you have as soon as possible. This way, you can figure out treatment early on, as well as engage in some life planning for a smoother transition when relapses occur. Read on for additional information about MS symptoms and how to recognize the early signs here.

Relapsing remitting MS: The most common form

The official term for relapsing multiple sclerosis is Relapsing Remitting MS. As mentioned, the condition follows a pattern: Clear attacks, followed by a clear recovery. 

While the symptoms for most types of MS are similar, what differentiates relapsing-remitting MS from other types is the onset of symptoms. 

Most people diagnosed with MS do start with the relapsing-remitting type. But in most cases, the condition does progress over time (years and decades), likely becoming worse. This is partially because remission doesn’t necessarily mean a full symptom recovery, potentially causing worse symptoms with each flare-up.

The good news, however, is that treatments have come a long way, with available medications that decrease inflammation and slow down the disease’s progression. 

Relapsing forms of MS: Understanding the subtypes

While an estimated 80% to 85% of people diagnosed with MS have relapsing-remitting MS, there are a few additional subtypes, including secondary-progressive MS. About 20% to 40% of people with relapsing-remitting multiple sclerosis can eventually transition into secondary-progressive MS. This is when MS patients develop a steady progression of symptoms, with or without periods of remission. 

The secondary-progressive MS transition usually occurs within 10 to 40 years of the condition’s onset.

The possibility of developing a more progressive type of MS is why it’s so important to work with your healthcare team to track your relapse pattern, whether the pattern remains steady or not. The ultimate goals of your treatment and management plan are to reduce the frequency of relapses and slow disease progression. 

What is an MS relapse? Breaking it down

According to the National Multiple Sclerosis Society, the clinical definition of an MS relapse (caused by inflammation in the central nervous system) is the occurrence of new symptoms or the worsening of old ones. In addition, three factors must be true:

• The relapse has to last at least 24 hours

• The current relapse must occur at least 30 days after the previous one.

• The flare-up is occurring in the absence of an infection or other cause.

Following these three criteria can make the difference between identifying an actual MS relapse and a temporary flare-up of symptoms. While a symptom flare-up can be uncomfortable and inconvenient, anything that lasts less than 24 hours is not considered a relapse. The same applies to the length of time between relapses: Relapses must be at least 30 days apart to be considered separate events. Otherwise, you’re not really experiencing a remission, or an easing of symptoms.

You also want to be mindful of pseudo-relapses, which are symptom flare-ups exacerbated by heat, stress, or an infection. 

MS relapse symptoms: What to watch for

The frustrating truth is that MS relapse symptoms will depend on the individual, but there are some more common relapse symptoms that you can look for:

• Vision changes 

• Tingling or numbness in various parts of your body.

• Fatigue

• Bladder or bowel problems

• Difficulty walking

• Muscle weakness or stiffness

• Cognitive difficulties (brain fog)

No matter what kinds of symptoms you have (common or uncommon), it’s a good idea to keep a symptom diary. This is because relapse symptoms can differ from your baseline symptoms, and if your MS does develop into a more progressive type, your doctor will have the clearest picture possible of your condition. 

Multiple sclerosis relapse symptoms: When they're subtle

Another annoying part of living with MS? Sometimes relapses aren't dramatic. Instead of experiencing acute symptoms, you may just have a few days’ worth of mildly worsening symptoms that feel easy to dismiss. 

No, you’re not imagining these internal symptoms: Whether it’s depression, fatigue, or pain, MS relapse symptoms aren’t necessarily debilitating, but that doesn’t mean they shouldn’t be addressed. 

This is when you need to trust yourself, because you know your body best. 

Difference between MS flare and relapse: Yes, there is one

While MS relapses and MS flare-ups sound and look similar, there is a critical difference between the two: 

An MS relapse is, as previously explained, a neurological event where new inflammation and/or the worsening of old symptoms occur, and this event lasts for at least 24 hours.

An MS flare-up is a temporary worsening of existing symptoms exacerbated by outside factors such as heat, stress, fatigue, or infection. 

Considering that both terms are used interchangeably, the distinction does matter when it comes to treatment decisions: Flare-ups resolve quickly, but relapses may need medical intervention. 

It’s not always easy to tell the difference between the two in the moment, but you will know if you’re experiencing a relapse rather than a flare-up if your symptoms last longer than 24 hours. 

MS flare up vs relapse: The practical guide

So how do you determine if you're experiencing an MS flare-up or an actual relapse?

Here are some questions you can ask yourself when your symptoms worsen:

1. Are my symptoms lasting longer than 24 hours? (If yes, then it’s a relapse; if no, then it’s a flare-up.)

2. What symptoms am I experiencing? Have I had these before? Or are there any new ones? 

You’ll also want to do a temperature assessment of your body, home, and outside environment: If your symptoms are temporarily exacerbated because of a rise in heat (either from the weather or illness), then that’s a flare-up, not a relapse. Keep in mind that stress and a lack of sleep can trigger flare-ups, too. 

There’s no harm in calling your doctor if you’re experiencing a flare-up. However, if you’ve determined that you’re experiencing an MS relapse, then you should contact your doctor without delay, as you may require medical attention (depending on your symptoms). 

When to go to the hospital for MS relapse

It can be difficult to determine if your MS relapse requires an emergency room visit, so the first step should always be contacting your neurologist for guidance. Depending on your symptoms, your physician will direct you either to urgent care/the ER or to come in for an office visit. 

While most relapses don’t require hospitalization, there are some cases where you will need immediate medical attention. 

Generally speaking, if you’re experiencing red-flag symptoms like vision loss, severe weakness, difficulty walking, trouble swallowing, or trouble breathing, that’s a sign to head to the hospital. 

And if you can’t reach your neuro team, don’t wait. Head over to urgent care or the ER. Medical professionals would always rather you seek medical attention than risk further harm.

Better safe than sorry.

What happens at the hospital during a relapse

So, you’ve made it to the hospital mid-relapse. Now what?

You’ll likely receive an assessment of your symptoms and possibly an MRI to confirm active inflammation. Depending on the severity of your symptoms, steroid treatment will be the next step (usually IV methylprednisolone), followed by monitoring and longer-term symptom management. 

At this point, you’ll want to plan your next steps with your neuro care team. If you haven’t made contact with your doctor yet, that should be your main priority. 

Multiple sclerosis relapse: What triggers it?

If we’re being honest, MS relapse triggers are different for everyone, and sometimes relapses aren’t even caused by anything obvious.

Yes, there are some common potential triggers like stress, infections, smoking, a Vitamin D deficiency, prematurely stopping disease-modifying therapy (not advised without speaking with your doctor first), and even the postpartum period. 

But the exasperating reality is that relapses can be random. 

For the record, keep in mind that heat isn’t necessarily a relapse trigger. A rise in temperature, however, can cause temporary symptom flare-ups.

Treating an MS relapse

The standard treatment for treating an MS relapse is medication that reduces nerve inflammation. This is usually in the form of high-dose corticosteroids.

For severe relapses that don’t respond to steroids, your physician may prescribe plasma exchange (PLEX), where plasma (the liquid part of your blood) is separated from your blood cells. The blood cells are then mixed with a protein solution called albumin and returned to your body. 

Additional treatments include physical therapy and rehabilitation during the recovery/remission period. 

Knowledge and preparedness of your condition are critical during this time. Unfortunately, recovery can take anywhere from days to weeks to months, and your symptoms may not fully resolve themselves, even if you do achieve remission. 

Remember to manage your expectations: Medications like steroids can speed up recovery, but they don’t prevent future relapses. 

Disease-modifying therapies: Reducing future relapses

Disease-modifying therapies (DMTs) are a type of multiple sclerosis treatment recommended for reducing the frequency of relapses, as well as slowing the progression of MS. Rather than treating active relapses, the goal of DMTs is to prevent their frequency and severity.

There are more than 20 DMTs available; some are injectable therapies, while others are IV infusions or oral medications.

Depending on the type, DMTs may help reduce the frequency and severity of relapses, slow the development of brain lesions, and potentially delay disability progression — though outcomes vary by individual and medication.

Wherever you are in your MS journey, consider discussing your DMT options with your neurologist, who can guide you toward a type of medication that is the most appropriate for you and your MS.  

Keep in mind that while you may be comfortably managing your MS symptoms, it’s important to stay on treatment even when you’re feeling good. 

Living with relapsing MS: The real talk

Even if you’re on top of your relapse patterns and are content with your current treatment plan, we understand that you’re still carrying a heavy mental load.

Remissions may be a physical relief, but they’re also characterized by the psychological strain of waiting for the next relapse, and balancing vigilance with actually living your life. Not to mention the fact that hormones and life stages can affect your MS relapse patterns. 

No matter how attuned you are to your needs, there is a distinctive identity shift that comes with MS. Suddenly, you’re not just “you,” you’re “you and an MS patient.” So in addition to tracking your relapse patterns, it’s equally important that you find people who understand what you’re going through, whether it’s via support groups or online communities. 

Remember, you’re allowed to be frustrated, scared, and hopeful all at once. 

Living well with relapsing MS, even when it’s unpredictable

While it may feel like every remission is just a ticking time bomb until your next relapse, the bottom line is that relapsing MS is manageable, especially with modern treatments. 

Early, consistent treatment makes a real difference, so the best way to advocate for yourself (and figure out an ideal treatment plan) is to listen to your body and learn its patterns. At the same time that you’re learning about your body’s patterns, make sure you keep asking questions of your healthcare team and of others who have multiple sclerosis.

Neurologist Dr. Mark Gudesblatt explains: “The importance of adhering to the treatment plan and being consistent with (if) the medication is prescribed is essential. Not adhering to treatment consistently can increase risks for relapse. Remember, not every relapse or increased problems related to MS are apparent to you or the neurologist. That is why proactive monitoring with MRI or other testing might be of great importance to identify these changes before they are very apparent.”

Above all, know that you’re not alone in this journey. The MS community is strong, and it’s here to help you. The more you know, the better equipped you’ll be to handle future relapses.