Is Your MS Treatment Working?
Preparing for Your Doctor Visits
When changes to your medications are needed, how can you achieve the best results? Prepare for your discussions, keep your thoughts organized, and direct the conversation in an efficient way, advises Burks.
He recommends using a memory aid, called SEARCH, developed by the Multiple Sclerosis Association of America. Framing questions about medications in a way both patients and doctors can understand, it provides a starter list of questions organized around issues of:
Safety. (How does this DMT interact with my current treatments?)
Efficacy. (How effective is this DMT in reducing MS relapses?)
Affordability. (Are assistance programs available to help pay for this DMT?)
Risk. (How can I manage side effects of this DMT?)
Convenience. (How often do I need to take this DMT?)
Health outcomes. (Will this DMT affect my immune system?)
"Like GPS, SEARCH helps you navigate the landscape to reach your desired destination," says Burks, which has become more challenging -- yet hopeful -- given a growing array of new treatments.
After you've prioritized your list of questions, he suggests sending them to your doctor beforehand, saying, "These are the questions I'd like to discuss with you." Advance preparation will allow your doctor to give you a more thoughtful response.
Exchanging Information With Your Doctor
Communication should be a give and take, but remember that you know best how MS is affecting your body, mind, and emotions. "Doctors are only as good as the information we get," says Giesser. How well you communicate with your health care team will make a big difference in the quality of MS care you receive as well as in your overall well-being.
Likewise, expect respect from your health care team and don't accept glib answers, says Burks. For example, this is not a response to settle for: "None of these meds cure the disease so, sure, you're going to have problems. ... Just stick with it." Instead, insist on clear discussions about your attack rate, progression of disability, MRI results, or intolerable side effects. "Don't be afraid to press your doctor if there is something you don't understand," says Burks.
Bring your top questions to each of your doctor visits. Put your biggest worry on the front burner where your doctor won't miss it. Are you feeling more depressed or anxious? Trouble staying focused? Your doctor won't be able to guess what's concerning you most. Speak up, even about issues you find more difficult to discuss, such as sexual changes, mood problems, or bowel function.
Sometimes these can become "don't ask, don't tell" problems, says Giesser. "The doctor is uncomfortable about asking, and the patient is uncomfortable about telling," But bring them up, she says, because they are very, very treatable.
Speak as clearly and concisely as you can, Let your doctor know about any:
- Feelings of hopelessness
- Fears of needles or side effects
- Previous bad experiences with health care providers
- Mixed messages from members of your health care team
- Inability to cope with the unpredictability of the disease
When describing symptoms, be specific, says Giesser. For example, people might simply describe pain as severe. She prompts patients to go further, like this: "If you tell me where it is, what brings it on, whether it's burning or stabbing or achy or grabby – the more information I have, the better I can tailor a therapy."