Life with MS

With relapsing-remitting MS, the one thing you expect is the unexpected. Symptoms worsen or improve by the day – or even the hour – and relapses come out of nowhere. Then there are the days where you feel just fine. Knowing the unpredictability of MS, you don’t expect those good days to last. What happens when they do?
 
During periods of stability, instead of concluding that their disease is well-managed and in remission, people with MS sometimes fall into the trap of several common
misconceptions.
 
“I’ve transitioned to secondary-progressive MS.”
 
Most people with relapsing-remitting MS are aware of the possibility that, at some point in the course of their disease, they may transition to a secondary-progressive course. At that time, they may experience fewer relapses with more steady progression of disability. However, the absence of relapses by itself does not indicate a transition to secondary-progressive MS. If you are not experiencing worsening or relapses, your MS may be in a period of remission.
 
Continue your regular routine of care and share any concerns you have with your healthcare providers. If your doctor sees no evidence of disease progression, there is no cause for concern.
 
“I don’t need MS treatment anymore.”
 
The goal of the disease-modifying treatments prescribed for MS is to slow the progress of the disease and reduce the rate of relapse. If you experience a period with no relapses, that indicates the medication is working well for you. However, some begin to wonder if they need their medication anymore, and if the remission would continue without it. Unfortunately, there is no way to know in
advance, and those who choose to stop medications frequently experience severe relapses. Because each relapse can cause further damage, and disease progression can occur even when you are not having relapses, consider carefully whether that is a risk worth taking.
 
“I’m cured.”
 
When a period of stability occurs at the same time as a change in your lifestyle, it’s easy to connect the two things together. Oftentimes, a person may attribute a lack of relapses to a new diet, supplement, exercise plan, or other life change that improves their well-being. Some may even jump to the conclusion that the change they have made is a cure for MS.
 
The word “cure” describes something that fixes the underlying cause of a health problem, ensuring that the condition will not return. The underlying cause of MS is not fully understood, but research suggests it is the result of a complex set of factors and conditions, including genetics, immunity, and environment. It’s unlikely that a lifestyle or nutrition change could alter all the factors involved. While such a change may improve a person’s health and contribute to a period of remission, without changing the underlying cause, it’s possible that MS can return.
 
For example, if a person adopts a new diet regimen and subsequently goes into remission, what happens if they stop that diet regimen? If they return to their old way of eating, they are just as likely to have an MS relapse as they were before they made the change. By addressing one contributing factor to MS, they may have brought on remission, but they did not cure the underlying disease.
           
A healthy diet, exercise, and certain supplements have been found to improve the health of people with MS, but only to varying degrees. Because of the complexity of the disease, a change that works for one person with MS may not work for another. In fact, many regimens that people have touted as cures based on their personal experience with remission have been studied, and so far none have been found effective for that goal in clinical trials.
 
It’s important to recognize that remission, however long-term, is not the same as a cure, and that what works for you may not work for others. However, if you find yourself in remission and believe it is attributed to a particular change that you have made, keep doing what you’re doing!
 
“I’m waiting for the other shoe to drop.”
 
It’s understandable that if you’ve been through the ups and downs of relapses and remissions for some time, you may have difficulty accepting long periods of stability. Instead of enjoying a period of remission, you may be anxiously waiting for MS to strike its next blow.
 
Stop and think about the purpose that worrying serves. It motivates us to do what we can to prepare for whatever we’re worried about. In the case of a relapse, you might prepare by having a plan in place to address your needs and responsibilities. For example, you might set money aside in case you
have to miss work, or you might develop a contingency plan for getting your children to and from school and extracurricular activities. But after your plan is made, does worry serve any further purpose? Or does it simply sap your energy and enjoyment of life?
 
Make a plan, and when worries enter your mind, firmly remind yourself that there’s a plan in place and you do not need to be concerned with it right now.

If you’re experiencing a period of time free of relapses, make the most of it. Keep up your care routine, continue taking positive steps to improve your health, plan for potential problems, and don’t worry about what MS’s next move will be. Enjoy the moment, relapse-free.