Discussing treatment with your neurologist
Choosing a disease modifying treatment (DMT) can be an intimidating task, particularly with a large number of DMT options available to you. Read on to learn what you can expect from the treatment decision process and how you can prepare for discussions about treatment with your neurologist.
Whether you are newly diagnosed or already receiving a DMT, the following information could help you to improve treatment related conversations and decisions at your appointments.
- They will consider many factors during this process. One such factor they take into account is your current health
- It’s important that you tell your neurologist about any health conditions you have, aside from MS. Some DMTs may not be suitable if you have certain health issues or are taking a treatment that interferes with them
- Whilst this shouldn’t be a problem when it comes to how well your MS can be treated, it’s important that any incompatible treatments are identified and ruled out
- support groups
- a family member
- MS Trust – Guide to decision making. Available at: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions/guide-decision-making. Last accessed: July 2019.
- Brown H et al. (2018) Physician and patient treatment decision-making in relapsing-remitting multiple sclerosis in Europe and the USA. https://doi.org/10.2217/nmt-2018-0023.
It’s important that you work in partnership with your neurologist to decide on the best treatment option that’s most suitable for you. The part that each of you play in this shared decision will ensure that you feel comfortable and happy moving forwards with your treatment plan.
One of the most important roles of your neurologist is to inform you about the available DMTs, their benefits and risks, and guide you through your treatment decisions.
The effectiveness of each DMT option is another key factor that your neurologist will often consider when making treatment decisions, weighing up the severity of your multiple sclerosis (MS) symptoms and the effectiveness of each treatment against their potential side effects and administration burden. They can then determine how much they believe you would benefit from each DMT and pick out those which they consider the most suitable for you.
In order for your neurologist to make this judgement, they also need to have a good understanding of your personal priorities, lifestyle and treatment goals.
By revealing little insights into your everyday life, such as your hobbies, work, family and personal priorities, you can start to build a strong foundation for your neurologist to understand what is important to you, help guide your treatment decisions and see where you could benefit from each DMT.
Remember – you are the true MS expert. Only you know what it’s like to live with MS every day and the true impact it, or it’s treatment, is having on your life. That’s why it’s so important that you share as much information as you can with your neurologist – to help them truly understand how you’re currently feeling and any issues you’re having. Then you can work together to ensure you’re managing your MS in the best possible way for you.
You should also be prepared for the possibility that your neurologist may ask more personal questions, such as your plans to have children. Although these can be difficult topics to discuss, this too can help your neurologist to provide the right support and advice when developing your MS treatment program.
Fill out your own Talk To Your Doctor Guide to support conversations around your lifestyle and personal priorities with your neurologist, and to help you demand more from your life with MS.
Whilst your neurologist can help to guide and support you through the decision process, it’s much harder for them to do so without your input. You have the power to add significant value to your neurologist appointments and in particular, the discussions that are had when deciding on the right DMT for you.
Although it can be difficult to speak up, actively participating in your neurologist appointments is likely to result in a better outcome for you. Take your time if you need to. Ask questions and increase your contribution to the conversation as you grow in confidence.
By giving your neurologist little snapshots of your life, you can really help them to understand you as a person as opposed to an MS patient. In addition to discussing areas of your personal life, your neurologist may also ask what you want to achieve from your treatment.
Speaking openly about your treatment and personal goals can help your neurologist to identify DMTs which best match your lifestyle and are most likely to meet your priorities for treatment.
Through engaging in open and honest conversations around your DMT options, it’s not just your neurologist who will benefit. Involving people living with MS in their treatment decisions has been shown to increase their commitment and adherence to their chosen DMT, thereby improving treatment outcome and satisfaction.
Some people can feel overwhelmed at the prospect of having to make such an important decision.
If you feel this way, try reaching out to:
Remember that you are not alone when choosing your DMT. Your neurologist is always on hand to reassure you and by working together, you can ensure you will make a shared decision you are comfortable with.
It can be difficult to know how to best prepare for treatment conversations with your neurologist no matter how long you’ve been diagnosed, but especially if this is your first time. Take a look at the tips below to support you in having effective discussions with your neurologist:
Try doing some research
Have a think about your treatment goals and priorities
What would you like your treatment to achieve? Whether it’s being symptom free or reducing long-term disease progression it’s good to think about your treatment goals before you head into your first appointment. It might also help to think about your priorities in life, whether that be your family, a hobby or something else. By establishing the things that matter most to you, it will help you to find a DMT that minimises disruption to your lifestyle.
Consider what you’d like to achieve from each appointment
It can sometimes help to plan and write out one question you want to be answered during your next appointment. This can help to focus the conversation on a main talking point. However, don’t feel like this should restrict your discussion.
Keep it open and let the conversation flow!
You can also find tips and support for your appointments with MS One to One smart assistant, Oto. Just say ‘Hey Google speak to MS One to One’ on any device logged into Google assistant.
If you are on a treatment and have been diagnosed with MS for some time, you should also complete your own personalised Talk to Your Dr Guide, this will help to steer conversation with your neurologist at your ongoing appointments.
How to express yourself in appointments
Read Barbara’s story and the advice she shares which has helped her to demand more from her appointments.
Setting goals in MS
Learn about the importance of setting goals and how to set the right ones for you.
Talk to Your Doctor Guide
Create a personalised guide to help you evaluate and discuss your MS at appointments with your neurologist.