Between relapses, people who have relapsing-remitting multiple sclerosis (RRMS) might not have any apparent symptoms or might even improve. Some feel well enough to go off medication.
However, taking a break from treatment could have an effect on your long-term outcome.
MS is an autoimmune disorder in which the body’s immune system attacks its own myelin. This protective shield insulates the lining of nerve fibers. Myelin is crucial for the nervous system to work properly.
MS drugs work by suppressing some of the activity of the body’s immune system. This protects myelin and prevents further destruction of the myelin sheath.
Once you stop taking your MS medication, your immune system can become overactive and attack your myelin again. You may not have any sign that this is slowly happening until it’s too late, and you have a relapse.
Your medications won’t cure MS, but they should reduce the frequency and severity of attacks and prevent the development of new brain lesions. Some medications may also slow down the progression of MS, reducing future disability.
“Clinical studies show that patients who had gaps in therapy lasting 90 days or more were nearly twice as likely to experience a severe relapse,” says Dr. Gabriel Pardo, director of the Oklahoma Medical Research Foundation Multiple Sclerosis Center of Excellence.
“It’s important for patients to find a routine that works for them and that they can adhere to,” he says.
“Patients might feel well between relapses, but in fact the disease is progressing, and they might not recover from their next relapse. The disease is still progressing, although the patient doesn’t know it. The brain has a great ability to repair itself and find new pathways. But if you create a roadblock, the brain can get around it some of the time, but not all of the time.”
Good communication with your doctor is essential to properly managing your MS.
“A primary issue for MS patients is to assure that there is open communication between patient and doctor,” asserts Dr. Karen Blitz of the Holy Name Medical Center in Teaneck, New Jersey.
“The issue is that people want to be good patients and please the doctor and may not bring up problems that need to be explored more directly.”
“For instance, a patient may be noncompliant because she has injection fatigue or skin issues from repeated injections and switching to oral medications may be a good option,” Dr. Blitz adds.
“Doctors have to ask the right questions and examine patient functioning, not just do routine tests or measure muscle strength.”
“Your doctor should ask you what your goals are,” says Dr. Saud Sadiq, the director and chief research scientist of the Tisch MS Center in New York City. Then, you can make a treatment plan you can both agree on with well-defined goals.
“When patients complain or fail to follow a treatment plan, it’s usually because those goals are murky and they don’t understand what’s happening,” Dr. Sadiq says.
“They go home not sure how the latest prescribed medication will work; there’s no follow up.
“If you come to me with pain, I’ll ask you where it is on the pain scale. If it’s an 8, then the goal will be to get it to a 2. I’ll try a few medical approaches and tell you to call me back in 2 weeks. If it’s not better, I’ll increase the dose or switch meds.”
To improve your relationship with your doctor and communicate more effectively, follow these tips:
- Keep a journal of your symptoms and
questions. Bring it with you to each appointment, so you’ll have a guide
for conversation with your doctor and you won’t forget anything important.
- Try to be as open as possible with your
doctor. Although some topics can be embarrassing to discuss, your doctor has
probably heard them all before and is there to help you.
- Ask questions. Whenever your doctor
suggests a new test or treatment, ask how it will help you and what side
effects it might cause.
- Make sure you understand. If any of your
doctor’s recommendations aren’t clear, ask them to explain them again.
Depression is far more common in people with MS than in people with other diseases, even cancer.
“We don’t know why,” says Dr. Pardo. “Approximately 50 percent of MS patients will get depressed at one time or another.”
Don’t be ashamed or embarrassed to talk to your doctor about your mood issues. Antidepressants such as Prozac and other SSRIs can help you feel better. Talk therapy or cognitive behavioral therapy (CBT) can also be very helpful.
Join an MS support group. Sharing tips, information, and feelings about coping with MS will keep you from feeling isolated. Your National MS Society chapter can help you find a local group or online forum.
“It’s important for patients to find a routine that works for them and that they can adhere to.”
– Dr. Gabriel Pardo
“When patients complain or fail to follow a treatment plan, it’s usually because those goals are murky and they don’t understand what’s happening.”
– Dr. Saud Sadiq