When you have MS, it’s important to be able to communicate well with the medical professionals who are taking care of you. The questions that you have are important, and their answers can help you manage your condition.
It’s normal for everyone to forget their questions at their doctor’s appointment. Since a change in cognition can be one of the first signs of MS, you may be even more likely to forget the things you wanted to ask about. Keep a journal to write down your questions as you think of them. Try a notebook or a cellphone app.
You might have questions from your own personal experience or from something you’ve read. Log each one as it occurs to you, make a list, and leave room to write down the answers you receive.
Here are six talking points to get you started at your next appointment.
1. Anticipate what your doctor will ask you
When your doctor asks for information, the more accurate your answer, the better. Make note of what you’re asked at each appointment to see if it’s anything you should be tracking for next time. An example is your symptom severity. Your doctor will want to know if your symptoms are getting better, getting worse, or staying the same.
2. Ask about new symptoms
If you have experienced something new and think it might be a symptom of MS, make note of it and write down as much detail as you can, such as:
- when it first appeared
- how often it happens
- how severe it is
- if it seems to be connected to something else
For example, new difficulties with walking might happen only occasionally and on days after you haven’t slept well. A detailed description of a gait problem can help your doctor decide on the best strategy or assistive walking device, if needed, for your situation.
3. Discuss medications and supplements
Keep track of medications you’re taking and any side effects that you may be experiencing. The same is true for any vitamins or herbal supplements you’re taking, or any significant changes to your diet.
If your doctor suggests that you try supplements such as fish oil or vitamins such as D and A, keep a record of the frequency and dose to see if any improvements coincide with the supplements. Ask your doctor first before trying anything new, because some supplements and herbal remedies can make symptoms worse or interfere with your medication.
4. Clarify when to call the doctor
If you experience a new symptom, or if an old one returns and lasts longer than a couple of days, you may be having a relapse. If it’s not a relapse, it might be something called pseudo-exacerbation, which is when factors such as fatigue or PMS make you feel worse. Ask your doctor to clarify which situations warrant an appointment.
You can treat relapses with steroids, but there are side effects. Even though steroids will put you back into remission faster, they don’t affect the long-term progression of your MS. If you decide against steroid use, your doctor might still want to be notified of any symptom change to more closely monitor the status of your condition.
5. Review treatment options
There may be something else you can do to help manage your symptoms and slow your disease progression. Ask your doctor if there are any more actions you can take, such as lifestyle changes. For example, if you don’t currently exercise, get clearance from your doctor to start. Read about treatment as much as you can between appointments and take notes. Write down any questions that you think of and bring them to your next appointment.
6. Ask about referrals to related specialists
If you have an MS diagnosis, chances are you already see a neurologist in addition to your doctor. Ask if there’s anyone else you should see who can help you. This could include a nutritionist, neuropsychologist, psychologist, speech-language pathologist, physical therapist, or personal trainer. Asking for this information can prepare you for what may lie ahead, as well as prompt the start of a new treatment.
The questions you have about your MS are important. Keep a journal and record anything that comes up between appointments so you can keep your doctor informed of your condition. Write down all your questions so that you remember them at appointment time. Keeping the lines of communication open between yourself and your doctor can help you manage your condition better.