Visits to the doctor are stressful at the best of times, For people with multiple sclerosis — who are dealing with different symptoms, many of them invisible — the prospect of visiting the doctor can seem overwhelming. Symptoms can be embarrassing, or you might assume that your MS symptoms can’t be treated. Fortunately, there are ways to make talking with your doctor easier and ensure you get the best quality treatment available.
A 2019 MyMSTeam survey found that about half of MyMSTeam members were experiencing cognitive dysfunction. Many of them had been told that it was just old age or “just stuff that happens.” When MyMSTeam surveyed those same people, almost half had those symptoms before they got an MS diagnosis. These symptoms are leading indicators of MS, but it hadn’t always been clear to members that they were something to discuss with a neurologist.
MyMSTeams recently spoke with Dr. Aaron Boster about how to effectively communicate with your doctor about your MS symptoms. Dr. Boster is a board certified neurologist specializing in multiple sclerosis and related inflammatory disorders of the central nervous system. He is the founder and president of the Boster Center for Multiple Sclerosis in Columbus, Ohio. His YouTube channel has many informative videos for helping people cope with MS, including 10 tips for talking to your doctor.
Ninety percent of what I learn about you is from what you tell me. If you don't tell me something, most of the time, I don't know about it. I can learn some things from the neurology exams, MRIs, and laboratory testing. But by and large, I'm going to help you in beating your disease by learning about what's going on from you.
Much of MS is invisible. I divide MS symptoms into “up there” and “down there” symptoms — mental and physical — and both of them can be hard to notice from the outside. “Up there” symptoms, like mood, cognition, and energy symptoms, are common for people affected by MS, but you don't look tired, you don't look confused, you don't look sad. The “down there” symptoms of MS involve bowel, bladder, and sexual function. Again, these are very common symptoms that people with MS deal with, but you can’t notice them just by looking at somebody, and they may be difficult to talk about. If we as doctors don't learn about these symptoms, then we can't help you.
I can treat every single one of those symptoms I just listed. Sometimes the treatment is a therapist or occupational therapy, sometimes the treatment is medication. The point is, if it's bothering you, I'm asking you to tell me about it. Then we'll discuss the options. I may come up with seven options, and you can say yes, no, or maybe to each one. Based on what you want to do, we can execute a plan. But it's all predicated on you telling me. I want my patients to feel comfortable bringing something to the table, because that way, we can discuss it and see the connections that allow us to put some things together.
Absolutely. I think that preparing a list when you go to see the doctor should be mandatory. You should write down a list of the issues that are bothering you. Write down your questions and bring a list of medical updates. Sometimes, when you're in the office, you may be overcome by emotions or you may simply forget things. If you have everything down on a piece of paper or on your phone, you can say, “Oh, Doc! I almost forgot. I'm having trouble feeling my leg.” You know? Then we'll be able to talk about it.
There is a prodrome for MS. A prodrome is a group of symptoms which people with MS experience before their first MS attack, and they tend to be cognitive, behavioral, and emotional. And, if you are able to talk to a specialist about these symptoms, they can be improved, even without medication.
There are so many things we can do to improve cognition especially, and I desperately want patients to tell me about cognitive symptoms. They’re some of the leading causes of loss of work and quality of life for people with MS and they’re treatable.
When you join MyMSTeam, you gain a support network of more than 150,000 others who understand what you are going through. Many MyMSTeam members report struggling to communicate effectively with their doctors. “If one more ignorant doctor tells me MS doesn't cause pain I'm going to lose it!!” shared one member. Another wrote, “I am just annoyed with my doctor, who isn’t helping me. I have been only talking to him through his nurse over the phone. I have not talked to him since I was diagnosed.”
Members often advise each other to find another health care provider if they are not receiving the care they need. “Get a different doctor,” one member advised another. “Your doctor needs to listen to you and what you are going through.” Another member shared that she has finally found an attentive doctor, but it took several tries: “I love my neuro. He is a leader in his field and is very understanding and caring. He is also the third neuro I have seen since my diagnosis six years ago. You don't owe these doctors anything. If you are unhappy, try someone else.”
On MyMSTeam, members are always quick to share their experiences communicating with their doctors and to offer support to others who are having challenges. One member encouraged another to ask a new doctor lots of questions at the first appointment — questions about treatments, side effects, and every single symptom they have noticed. He ended with the advice, “Remember, a good doctor is your partner on this journey. :-)”
Here are a few question-and-answer conversations about communicating with doctors:
Do you have trouble talking to your doctor about symptoms? Can you share any tips with others for how to better communicate with health care providers? Comment below or post on MyMSTeam.
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