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."