Diane Kramer, 35, knows all too well the challenges of finding the right multiple sclerosis (MS) treatment. When she was diagnosed in her 20s, she tried several drugs, one after the other -- and has tried several more therapies since.
“My first disease-modifying treatment was completely dictated by insurance. I wasn’t part of the conversation,” Kramer says. “Then I changed insurance, so I had to change medications. I went from using an injectable once a week to using an injectable once every 3 days.”
The new drug left her covered in welts and flattened by flu-like symptoms. But perhaps even worse, she says, was the relationship she had with her new neurologist. “He told me I would be in a wheelchair in a year, so I should probably consider not working so I could spend more time with my family.”
After that, Kramer made it a priority to find a doctor who would fight for her health. “I’m in a very good place with my MS right now, and I attribute that hugely to having a great doctor who is ready with an answer about what’s next, no matter what issue I’m having.”
Joash T. Lazarus, MD, a neurologist at the Multiple Sclerosis Center of Atlanta, says finding the right treatment isn’t easy because the disease affects everyone differently. Having a good relationship with your doctor can make medication adherence more likely, especially when you need to experiment with different drugs to find a good fit.
Have the Awkward Conversation
When your MS doctor asks how you feel, you may find it easy to mention numbness, weakness, vision problems, loss of coordination, dizziness, and fatigue, which are all common symptoms in MS.
Would you also freely talk about more intimate concerns? These also are symptoms of MS:
- Loss of bowel control
- Painful constipation
- Inability to orgasm
- Peeing during sex
- Forgetting what to do at work
Sometimes people don’t bring such issues to their doctors’ attention, says Pavan Bhargava, MD, assistant professor of neurology at Johns Hopkins University Medical School. “I think embarrassment is a factor, or patients selectively leave out things they think aren’t related to MS,” he says. “Patients need to know that MS can affect a broad spectrum of things that have a huge impact of quality of life, and that there are ways to improve a lot of them.”
Lazarus agrees. “Sometimes it can be very uncomfortable for patients to talk about some of the more intimate ways MS affects you, but it’s the only way we can help,” he says.
Talk About Treatment Goals
Trying multiple therapies throughout the course of your disease is common. Doctors will recommend a switch if you’re on a disease-modifying drug that isn’t working well enough or if you find the side effects tough to handle.
Before you start taking a new drug, ask your doctor what to expect. Will you have different side effects? Will you start to feel better? How will you know if it’s working?
Bhargava says people with MS are often concerned when they don’t feel better because they don’t know that isn’t what the drugs are designed to do. “The goal is to prevent new lesions so that the disease does not get worse over time,” he says.
To feel better both physically and mentally, you’ll probably need to add treatments that improve your MS symptoms, not the course of the disease. Some examples include:
- Physical therapy
- Muscle relaxants
- Medications to reduce fatigue
- Treatments for bladder or bowel problems
- Pain relievers
If these approaches don’t give you enough relief, work with your doctor to find options that will. “I was in a lot of pain, and narcotics make my neuralgia worse,” Kramer says. “My current doctor suggested acupuncture could help. Now I’m not at all struggling with pain.”
Know Your Options
Many things go into finding the right treatment, including cost and insurance coverage. But even if you don’t have the full range of MS drugs available to you, there are still important points to discuss with your doctor before selecting a treatment.
Delivery method. There are 15 disease-modifying drugs available for MS. These include injections (shots), pills, and infusions (getting a drug through a needle in your vein). One of the most important things that should go into your decision is which type of drug you’re most likely to take. “Tablets are only effective when you’re taking them. If you could be missing doses, maybe an infusion is a better choice,” Lazarus says.
Side effects. MS drugs also come with a range of side effects, including a rare and serious viral disease in the brain called progressive multifocal leukoencephalopathy. “Some of the highly effective treatments put you at higher risk for PML, and many patients might prefer less effective but more tolerable medication,” Lazarus says. Flu-like symptoms and pain where the needle goes in your skin are also common, but there are ways to limit discomfort. (For instance, slowly raising the dose is one way to reduce flu-like side effects in certain disease-modifying drugs.)
Non-drug approaches. “There’s a lot we don’t know, but the data doesn’t support [non-drug approaches] as a solitary means of treating the disease,” Bhargava says. But complementary therapies can help you feel better -- as acupuncture did for Kramer. “There are a number of things you can do, like changing your diet or exercising, that can improve your quality of life and lessen the impact of this disease.”