As a patient living with MS, knowing when you are experiencing a relapse is not such an easy task. I used to think that the objective definition - new or worsening symptoms present for more than 24 hours - was a clear enough definition to inform me if my MS was relapsing or not. I was mistaken.
During the first few years of living with MS, relapses did seem to be more clear-cut. It was apparent when something new occurred or when previous symptoms got worse and I would call the nurse. Each time, she scheduled me to see the doctor the next morning and I knew what was coming. I would be sent down the hall to the infusion suite to begin a new round of intravenous steroids.
By the time I called the office, I had been experiencing the symptoms for a number of days. It was undeniable that they were not going to go away on their
own. The new and/or worsening symptoms needed the help of steroids to get gone. There was only one thing which would have prevented the need for steroids and that was if a urinary tract infection (UTI) were present. So providing a quick urine sample to be tested was warranted. By the way, only once did I have a UTI when I thought I was having a relapse.
Why would I have to be tested for a UTI? If the body is fighting an infection, becomes overheated (from exercise, hot and humid weather, etc), or is effected by changing hormones, a pseudo-exacerbation can occur. This is not a true relapse but can feel like one. When the source of the rise in body temperature is resolved, then the symptoms will typically resolve as well. If they do not, call the doctor.
Another situation which has come up more recently is that I might experience heightened symptoms (but less severe than "normal") which lasted for about one to two weeks and resolved on their own. The symptoms weren’t disruptive enough to warrant steroids but they were definitely noticeable. Is that a relapse? Very well could be. It would be smart to call your doctor if only to have the episode documented in your record so that any developing patterns of relapse or worsening of disease can be detected over time.
Questions to Ask and What to Do If You Have New/Worsening Symptoms:
- Do you suspect a urinary tract infection? Call your primary care doctor or go to an urgent care clinic to be tested quickly. If you have a UTI, then your symptoms are likely part of a pseudo-exacerbation.
- Do the symptoms occur when you are overheated but go away when you cool down? You may be experiencing a pseudo-exacerbation.
- Have the symptoms been present for less than 24 continuous hours? Wait another day before calling the doctor.
- Do your new symptoms involve your vision? Call the doctor without delay.
- Have your symptoms progressively gotten worse over two to three days? Call the doctor.
- Have your symptoms resolved on their own after a week or so? Take note so that you can report it to your doctor during your next office visit or call the doctor. He/she may want to see you and perform a quick neurological exam.
A final word of advice I would give to any MS patient? If you have any question regarding your MS and a possible relapse, do not hesitate to call your doctor’s office. You may need a round of steroids to cut the relapse short. Over time your relapses may become less severe (which is certainly the hope with disease-modifying drugs), but they are relapses nonetheless and should be documented in your medical record.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.