Be prepared and make a list of questions in advance, (see the checklist below. ) Ask for extra clarification if you have not fully understood the answer and take a friend or family member with you to assist in recalling the answers or to write them down.
Consider the below when compiling your questions.
New symptoms that may be caused by multiple sclerosis: Not all symptoms will be due to MS, however, writing down new symptoms you are experiencing will assist your neurologist to advise you on managing them.
Old symptoms returning or worsening: Occasionally old symptoms will reappear, or existing symptoms may worsen. There are many reasons why this might occur. Discussing these changes with your neurologist will give them some indication of how your MS is impacting your life and will guide them in which management strategies to recommend.
New MRI or lab results to discuss: If you have 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, your MS might be very active. This should settle. However, having numerous sick days and feeling very unwell could cause you to make changes that can have an impact later. Before you make any major life changes such as changing jobs, stopping work or moving house, consider discussing the options and impacts with your MS community advisor, get in touch here.
Considering family planning: If you are considering starting or growing your family, even if not immediately, it is important to have this conversation early with your neurologist. It may help determine what treatment may be right for you.
Any questions about treatments: Medications may be available for you called Disease Modifying Therapies (DMTs). They help manage your MS, relapses, and symptoms. DMTs act as an insurance policy, as they work to prevent relapses, but they have side effects. If you are struggling with the medication, you have been prescribed, it is important to discuss this with your neurologist.
Side Effects: Make sure you, and your support network, know what side effects to be aware of and how to report these. Some side affects you might not notice yourself, but others close to you might notice some changes. Check with your neurologist and MS Nurse the steps you need to take if you have any concerns.
Other medications: No matter what form of multiple sclerosis you are experiencing, your neurologist needs to know all about the 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.
Between appointments: 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 always contact a community advisor!
Contact between Neurologist and GP Most GP’s will have minimal experience of people 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. MSNZ 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 symptoms.
They might suggest you write up a self-management plan which enables you to make informed choices about your health care, helping you to live as well as you can with your MS.
Goals and plans: As your appointments might be infrequent, it is wise to talk about what you could be doing in the 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.
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. You can take it with you and make notes on it during the appointment, or your support person can make the notes for you.
MS Auckland and the MS Team at ADHB ran a series of seminars for Newly Diagnosed online, here are the recordings.
Fiona d'Young gives an informative talk on what happens when you go for an infusion - demystifying the process.
