We know that life can be busy and before you know it you have gone months without a check-in with your Multiple Sclerosis (MS) care team. However, it’s really important that you keep in regular contact with your team to monitor and manage your disease. Sometimes you may have to advocate for yourself during appointments to make sure you receive the care that you deserve.

Here we discuss some practical tools you can use to help you demand more from your MS care. We also provide some top tips for those that care for you, so they can help to make sure you’re not settling for care that’s anything less than you deserve.

The MS care team

To monitor your MS, you should be having regular appointments with an MS nurse and a neurologist.

Depending on the country you live in and your specific needs, you may also see other specialist healthcare professionals (HCPs) including, physiotherapists, occupational therapists, and psychologists. You can learn more about the potential role of the wider MS care team here.

The importance of regular check-ups

Even when you’re feeling well, it’s important that your MS is regularly monitored to keep track of symptoms and to check for any signs of progression. There are two main ways to keep track of your MS:

1. Taking measurements based on your MS symptoms

Your MS care team will want to keep track of how your MS symptoms are changing over time. You will be asked about whether you’ve been experiencing any new symptoms, about your daily life and how you feel. Your reflexes will be assessed, as well as how well you’re able to move, speak, see, and think.

2. Taking measurements that help to assess the disease process happening inside your brain

An MRI scan is used to see the size, location, and number of lesions in your central nervous system. By comparing your MRI scans to previous scans, your MS care team can work our whether your MS is stable or active, and how your current treatment is working.

A combination of these measurements will be assessed by your MS care team to determine how you are progressing. Knowing whether your condition is under control, or if it’s getting worse, can help your neurologist understand how well your current treatment is working, and can support them in ensuring your MS is being managed in the best way possible.

Sometimes you may have a long time between appointments, making it especially important to keep track of any symptoms you may have experienced since you last saw your MS care team. This can also help you to better understand your own MS, as it can otherwise be difficult to monitor how your MS symptoms are changing over time.

Advocating for yourself

An appointment with your MS care team is a great opportunity to discuss what is important to you! To get the most out of the time with your MS care team, you may need to advocate for yourself during an appointment. For example, a doctor may not be discussing a topic that you think is important or you may want to talk about the possibility of making changes to your MS management plan. You are perfectly within your rights to demand more from your MS care team. Here are a few tips to help you advocate for yourself during appointments:

Find your perfect match

It is important that you feel comfortable enough to have open and honest conversations with your MS care team. However, you may consider getting a second opinion if you feel uncomfortable during appointments, your concerns are not being taken seriously, or you are not being listened to.  If you’re not satisfied with your current neurologist or MS nurse, you might be able to request a different one – this will of course depend on where you live and the availability, but many healthcare practices will do their best to accommodate your needs.

Supporting a loved one

If you are a loved one or carer of someone living with MS, you can play an invaluable role in helping them to demand more from their MS care. As a "neutral observer", you may find it easier to ask questions, address difficult topics, or ask for more detailed explanations from their care team. People living with MS have a lot on their plate, so you can also support them by advocating for appointments, to make sure the person you care for is seen regularly by their MS care team. 

It is important that you discuss with the person you care for what would help them the most. This can range from simply taking them to and from appointments, to being present in the appointment and contributing to the conversation. It is important to have open and honest conversations and that boundaries are set. Below is a guide of where you may be able to offer help: