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How Do I Know if I'm Having an MS Relapse?

Criteria For Determining MS Exacerbations

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Updated June 13, 2014

A: You know, that is a great question. The answer to the question “am I having a relapse (also called exacerbation, attack, flare)?” can be pretty clear when you are having new multiple sclerosis (MS) symptoms that started pretty suddenly and are interfering with daily life.

However, I would guess that most of us have days where something is a little "off." Maybe you feel a touch more disorganized than usual (is it MS-related cognitive difficulties or just a busy day?). Maybe you get up a couple more times at night to urinate (is it nocturia or too much to drink close to bedtime?). Maybe you feel some pressure in your ribs (is it the MS hug or lifting heavy groceries?).

In these situations, the answer to the relapse question is pretty fuzzy and can only be answered definitively by climbing into an MRI tube to look for new lesions. Old lesions often leave damage in the form of scar tissue, which can cause residual symptoms, especially when you are fatigued or stressed. Pseudoexacerbations are temporary increases in symptoms caused by external factors, usually heat, which go away after a short period of cooling off. These can also be the result of infections, especially ones that cause fever.

As someone who asks myself the "relapse or not" question with great regularity, I deal with this by taking it a step further and asking, "Is it interfering with activity or causing significant pain?" If it isn't, your doctor will probably not be willing to put you through an MRI unless he plans to follow up with Solu-Medrol, which doctors usually save for the severe exacerbations because of the drug's side effects. The exceptions to this are: 1) your doctor may want to give you an MRI scan to see if your disease-modifying therapy is working or if there are new (or more) lesions, which may indicate that it is time to consider switching therapies; 2) it has been awhile since your last MRI and your doctor wants to monitor the situation anyway.

The Official Definition of a Relapse

The official international definition of a relapse is “a period in which a person with MS experiences an acute worsening of function that lasts for at least 24 hours, usually lasting for several days or weeks, followed by an improvement that lasts for at least one month.” To get even more specific, the symptoms associated with a relapse will develop over a couple of days, remain the same for three to four weeks, then slowly get better over a period of about a month.

What Does That Really Mean?

You can suspect a relapse if you answer “yes” to the following questions:
  • Am I experiencing new symptoms or worsening of existing symptoms?
  • Has this worsening happened over the course of 24 hours to a couple of days?
  • Have these symptoms lasted more than 24 hours?
  • Has it been at least a month since my last relapse? (In other words, had these symptoms been non-existent or stable for at least 30 days before they appeared or got worse?)
  • Am I free of fever or infection?

Additional Points

Signs Count, Too: It is not just symptoms that signal a relapse, but clinical signs also matter. A sign is an abnormality that is identified by a doctor during a neurological exam. They may be different than symptoms that the patient reports, because they may not be recognizable to the person with MS and are identified when the doctor conducts certain tests.

When to Contact Your Doctor: Please contact your doctor if you are ever worried or if symptoms bother you or stick around. Even recent onset of vague "fuzzy-headedness" or the fact that you drop things more frequently may signal something that he can identify during a neurological exam (see discussion of “signs” above). Whether he decides “relapse” or “no relapse,” your doc may have medications to ease some of your symptoms to make life more comfortable.

Act, Don’t React: Don't let MS take over any more than it already has by worrying about relapses with every twinge. Enjoy life. Try resting more or staying out of the heat to see if that might help. See a doctor if you are concerned, but try not to let every strange sensation send you into a panic and conjure up visions of increased disability. It may be a relapse and it may not, but the best thing you can do is to stay calm and act rationally. I know for myself that the more stressed I am, the worse my symptoms seem.

Source:

Poser, CM; Paty, DW; Scheinber, L; et al. "New Diagnostic Criteria For Multiple Sclerosis; Guidelines For Research Protocols." Ann Neurol 1983; 13(3); 227-231.

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