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Talking About Your MS: Doctors Are Not Mind Readers

You’re a key player in your multiple sclerosis (MS) care. Neither the neurologic exam nor an MRI can tell the doctor everything that’s going on in your body. This means that even the most experienced of MS specialist physicians can’t do the job alone — your input is essential. Because the information you provide during your office visits enables your doctor to formulate treatment recommendations, this is no time to put on a show!

Believe it or not, some patients cancel their appointments because they aren’t feeling well (illogical, but true); some withhold information about their symptoms because they don’t want to be a “bad” patient (even though this isn’t school and no one is being graded); some put on a happy face because they don’t want to be thought of as complainers (this isn’t a popularity contest).

Some have even told the doctor that everything was fine because they didn’t want the doctor to “feel bad.” The point is, your healthcare providers need information that only you can provide. This information includes the following:

  • Physical, cognitive, or emotional changes you’ve noticed since your last visit

  • Problems, allergic reactions, or side effects that you think may be due to your medications

  • New prescriptions, supplements, or over-the-counter meds you are taking

  • Difficulties you’re having with everyday activities — at home and work

Unfortunately, your time with the doctor or nurse may be limited to 15 or 20 minutes. So, the best strategy for using that time well is to come prepared to talk about any problems you’re having. If you’re only concerned about one issue at the moment, give it all you’ve got: Make sure to describe what’s been happening and how it’s affecting your daily life.

If you have a whole litany of problems, bring a prioritized list for the doctor. Chances are that everything can’t be addressed at once, so you and the doctor need to tackle the most important things first.

Some of the most common problems people have are the most difficult to talk about. But doctors and nurses don’t blush easily, and those who are experienced in MS care know all about the bladder and bowel symptoms, sexual issues, and problems with thinking and memory (“the big three”) that plague many people with MS.

For heaven’s sake, don’t hold back. And if your doctor never asks about these kinds of problems, or doesn’t seem comfortable when you bring them up, it’s definitely time to start looking for another doctor!

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