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When multiple sclerosis (MS) symptoms intensify, anxiety and discomfort can make it hard to tell if you need to take immediate action for a serious situation or weather a bad day. Even though an MS relapse — or flare-up — doesn’t usually require a hospital visit, it’s important to be able to recognize when a relapse is an emergency.
MyMSTeam members have often expressed concern about when they should go to the hospital. “When do you go to the emergency room for a relapse? Feeling horrible,” wrote a MyMSTeam member.
Another member said, “I am having more days of wanting to go to the emergency room. Always in pain — I don’t know what to do!”
Multiple sclerosis is a disease of the central nervous system. With MS, immune system dysfunction causes nerve fibers to malfunction and lesions — or scars — to form on the brain, spinal cord, or optic nerves. Symptoms of MS include difficulties with motor function, vision, and cognitive functioning (thinking and memory). People with MS commonly experience fatigue, muscle spasms, numbness, or tingling. They may also have problems with bladder or bowel function, among other symptoms.
Debilitating fatigue, weakness, and other symptoms can affect your quality of life, but they may not indicate a relapse. Understanding more about which symptoms suggest a relapse can help you recognize when you might need emergency medical care.
Worsening of previous MS symptoms or the onset of new symptoms that last more than 24 hours and occur at least 30 days after a previous flare-up ended is considered a relapse, also called an attack or exacerbation. Relapses occur when inflammation causes new lesions to form due to damage to myelin, the protective coating on nerves.
Typically, a relapse develops over 24 to 48 hours and reaches its full severity within several days. The frequency and severity of relapses vary among people with MS.
In relapsing-remitting multiple sclerosis (RRMS) — the most common type of MS — a relapse can last days, weeks, or even months. Then, during remission, symptoms calm down or go away entirely. Relapses can also occur in secondary progressive MS, in which disability from MS gradually gets worse, rather than going into remission.
If your new or worsening symptoms last more than 24 hours, you should first discuss them with your neurologist. If you can’t reach your doctor directly, speak to a nurse or a physician assistant. In many cases, a relapse may be characterized by mild symptoms, such as tingling or numbness, that don’t need treatment or by more severe symptoms that can be treated outside of a hospital.
Symptoms are considered serious and in need of hospital treatment if they prevent you from eating or drinking, caring for yourself, or walking. Symptoms that may require hospitalization include:
One MyMSTeam member wrote, “I’m back in the hospital. Second attack of the year that’s landed me in hospital after nine years of no stays. Frustrated — paralysis, spasticity, legs just plum don’t work.”
Another member shared their experience: “I started getting vertigo. It kept on getting worse. Then I probably got sicker than I ever have. Finally, I got too weak to walk. Long story short, I was admitted to the hospital.”
Always get medical advice, if possible, before going to the hospital for a relapse. An unnecessary trip to the emergency department can be expensive, time-consuming, and uncomfortable, with long waits. “Ugh. Sitting in the emergency room for two hours now. My neurologist wants MRIs — thinks I’m relapsing again. My whole body hurts😔🤕,” a member said.
If you experience severe neurological symptoms but can’t reach your health care provider directly, be sure to let your doctor know as soon as possible that you’re seeking emergency care.
MS symptoms can also intensify during pseudo-relapses, also known as pseudo-exacerbations or fluctuations. Pseudo-relapses can be caused by factors such as:
A pseudo-relapse usually resolves within 24 hours. In one study, researchers noted that people experiencing pseudo-relapses who go to emergency departments don’t usually need to be hospitalized for treatment. For example, if a pseudo-relapse is caused by an infection, treating the underlying problem will likely improve MS symptoms.
If you are taking natalizumab (Tysabri) to treat your MS, you should immediately report any worsening symptoms to your doctor. These could be side effects that increase your risk of a rare but serious brain infection. Your doctor can advise you on what to do, such as getting emergency care.
Depending on the severity of your relapse, your doctor will determine if a hospital stay is the best option. Your relapse symptoms might require high-dose, fast-acting steroids, which can sometimes be given outside the hospital. Your doctor might also order an MRI.
If you are having an acute exacerbation that needs treatment, you may be admitted to the hospital for an IV infusion of high-dose corticosteroids, such as methylprednisolone (Solu-Medrol). Corticosteroids are the most common treatment option for severe MS relapses. These drugs can quickly reduce inflammation and help prevent permanent damage, such as vision loss. A course of high-dose steroids typically takes three to five days.
Corticosteroids can have side effects, including:
Because of these risks, corticosteroids are given only for serious MS relapses. People who can’t tolerate steroids may receive another type of treatment, such as plasmapheresis (plasma exchange) or injections of repository corticotropin hormone (Acthar Gel).
A MyMSTeam member described their experience with steroids. “My whole left side has shut down. So I’m going into the hospital tomorrow for a seven-day course of steroids,” they said. “The steroids have to be done intravenously because taking them orally, I just throw them back up. I suffer from bad stomach cramps. So, the hospital is the only way to go.”
Corticosteroid infusions can also be given at an infusion center or even at home. People who can tolerate oral steroids or improve with a steroid injection by syringe may not need an IV infusion during a relapse.
Even if you’re experiencing a difficult relapse, your doctor may initially recommend that you seek treatment outside of a hospital. As one team member described: “My flare-up is very bad — legs and arms feel like lead weights, and walking is very difficult right now. Intense tingling and spasms. Fatigue is insane. Had a steroid injection today and will have another one on Monday. Have an emergency appointment with a neurologist next week. I may need to go to the hospital for IV steroids.”
Before administering high-dose steroids, your doctor may recommend an MRI to evaluate disease activity or confirm that a relapse has occurred.
One MyMSTeam member described how their symptoms led to an MRI. “Having a bad day and took a trip to the emergency room for severe leg and calf spasticity,” they said. “I can’t stand or walk. My leg muscles won’t loosen up. Just finished up with another MRI and waiting on results.”
Another member wrote about their hospital stay: “My MRI was actually good news to me. They said there were no new lesions, and lesions from the previous MRI appear improved or are smaller than the prior examination 😊. But still didn't explain why I’m off-balance with terrible headaches and spine pain. So that got me admitted overnight for observations 😒.”
Let your neurologist know right away if you go to the hospital because of worsening MS symptoms. While there, tell the emergency room doctor about your MS, symptoms, and treatments, and answer all their questions as best you can. Good communication and shared decision-making are key to getting the highest-quality care if you go to the hospital for an MS relapse.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 195,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Do you have questions about relapses and hospitalization? Have you been hospitalized with a relapse? Share your experience in the comments below, or start a conversation by posting on your Activities page.
Luc Jasmin, M.D., Ph.D., FRCS (C), FACS is a board-certified neurosurgery specialist. Learn more about him here.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.
