Your appointments with your neurologist or health care team may be few and far between, and you may not have very long to ask a lot of questions.
Make the most of your appointment. Most neurologists appreciate you coming to an appointment with some questions. If you are unsure ask them for their suggestions on the best way to have questions answered.
Ask questions and seek clarification if you have not fully understood the answer
Prepare your questions in advance of your appointment, write them down as they come to you
Take a friend or family member with you, this will assist in recalling the answers after the appointment, they might even write for you while you listen.
Record your appointment
Use a checklist to help you think through things you want to discuss.
My appointment date and time
If you use this checklist for each appointment you will have a thorough record of your disease activity over time. Include the date and time of your appointments to aid this process.
There are apps that can also assist you to track your symptoms.
New symptoms that may be caused by multiple sclerosis:
Not everything you experience will be due to your multiple sclerosis, however writing down the new symptoms you are experiencing will assist your neurologist to advise you on how best to manage the particular symptom. They won’t know unless you tell them. A neurologist will not ask specifically about each possible symptom, they rely on you telling them what you’re experiencing.
Old symptoms which have come back or become worse:
Occasionally old symptoms will reappear or existing symptoms will worsen. There are many reasons why this might occur. Discussing these changes with your neurologist will give them some indication of how your disease is impacting your life and will guide them in regard to management strategies.
Any new MRI or lab results to discuss:
If you have had any tests prior to your appointment it is helpful to ask for the results.
Often the results alone will only form part of the picture, ask your neurologist what they’re looking for.
Any major life changes to share:
Particularly at the start of your journey with multiple sclerosis, disease activity can be very active. This should settle. However, having numerous sick days and feeling very unwell can cause you to make changes that can have an impact later on.
Before you make any major life changes such as changing jobs, stopping work or moving house, seek advice. Call your state's MS organisation to discuss the options and reasons for any changes you are considering.
Any questions about medications:
Medications are available to modify the disease course (RRMS) or manage the symptoms of multiple sclerosis. Disease modifying treatments act as an insurance policy, as they work to prevent relapses. But they have side effects. If you are struggling with the medications you have been prescribed, it is important to talk about this with your neurologist. No matter what form of multiple sclerosis you are experiencing, your Neurologist needs to know about all medications you are taking, including prescribed, over the counter and herbal preparations as there can be interactions between certain products that reduce the efficacy of medications. Remember to ask about any prescriptions that you require.
Most clinics have a contact point for questions and concerns between appointments and it is important to work out a strategy with your neurologist. Do you call them? Do you go to the emergency department? Is there a clinic nurse you can contact? Remember you can call your state's MS organisation but they are not an emergency service and discussing a strategy with your neurologist will be helpful.
Contact between Neurologist and GP:
For most GP’s, they will have minimal experience with patients living with multiple sclerosis. A good GP is one who is willing to learn with you. Establishing what information will be shared between your neurologist and your GP can be helpful. Some neurologists will be happy to provide updates to your GP, others will expect you to pass on information.
What else could I be doing to help my MS?
Maintaining health and wellness is vital for people living with chronic health conditions.
MS endorses a holistic approach to living a healthy lifestyle that includes attention to fatigue management, nutrition, physical activity and social connections.
Discuss with your neurologist the strategies they feel would assist your particular symptom mix.
They might suggest your GP write up a Chronic Disease Management Plan to provide you with opportunities to connect with approved allied health.
MS has a wide range of programs and recordings where you can learn more about lifestyle approaches to assist in managing symptoms and living well. Check out the education programs on offer.
Questions I have about my multiple sclerosis:
If you use this checklist to write down your concerns and questions between appointments, you can re-read it prior to your appointment and determine what to prioritise in your conversation with your neurologist. Copy it and show it to your neurologist; they might make notes, or you or your supporter might make notes. You might even ask to record the conversation using a recording device to refer to afterwards.
Goal and Plan for 6 months:
Given your appointments might be infrequent, it is wise to talk about what you could be doing in the intervening period until your next appointment.
This conversation may initiate referrals to other services such as a continence clinic, a physiotherapist or a psychologist for support.
Record your visit:
The information you discuss with your health care team during these appointments is often complicated and nuanced. Like many people with MS, you may at times struggle with cognitive issues and the nature of having an incurable, potentially disabling disease may add an emotional element to these appointments. Even if you take notes, sometimes you can find details hard to understand or recall afterwards.
There are plenty of smartphone recording apps for both Android and iPhones that you may use for recording each appointment. Be sure to ask your doctors / neurologist/ other health care team for permission to record the meeting before you turn the recorder on.