Questions to ask your MS health professionals

Ryan Jones from MS-UK’s helpline explains what information you might need when diagnosed with MS

When faced with a new diagnosis of multiple sclerosis (MS), it can feel overwhelming and scary. But you will undoubtedly have important questions to ask your MS team. Whether you meet with your neurologist or your MS nurse they will be able to help answer the questions you have.

It is a good idea to prepare and think in advance as to what the most important subjects are to you. We have written some prompting questions to help you organise what questions you may wish to ask.

There is already good information available about MS – some of your questions may already be answered by reading our Choices information booklets. Our content is called ‘Choices’ as MS-UK aim to support people to have as much choice, control, and independence as possible.

Our content covers a wide range of issues such as ‘what is MS?’, ‘MS symptoms’, ‘MS diagnosis’ ‘MS treatments’, and other aspects of ‘life with MS’. The content contains real quotes, insights and experiences of people living with MS. All our Choices booklet content is available online or can be ordered for free as a physical booklet.

It is important to remember that although your MS team are experts in working with people living with MS, everyone is different, and has different values and expectations of life. You should be an equal partner in your care and there should be shared decision making, meaning you will have choices and options about your MS treatments and management.

We think that you may need to break your questions into categories that will help you. We suggest

1. Understanding MS
2. Treatment options
3. Symptom management
4. Monitoring MS
5. The potential impact of an MS diagnosis on your life

Here’s a breakdown of important questions to ask Understanding MS

• What exactly is my diagnosis, and what does it mean?
• What can I expect in terms of how my condition will progress?
• What are typical symptoms that I might expect to experience?
• Could MS affect me both physically and mentally, if so, how?

Treatment options

• What are my treatment options, and what are the potential benefits and risks?
• Are MS and its symptoms treated with the same medications?
• What are the goals of treatments for MS?
• What medications or therapies are there, and how are they administered?
• What lifestyle changes, if any, are recommended to help manage the condition?

Symptom management

• What should I do if I get new or worsening symptoms?
• Is there anything I can do to reduce the impact of symptoms on my life?

Monitoring MS

• Will my MS be regularly monitored, how often and by who?
• Will I need regular tests?

The potential impact of MS on my life

• Will MS affect my ability to work or participate in meaningful daily activities?
• What self-management strategies can I use to better manage the condition?
• Is MS likely to affect my relationships and how can I help friends, family and colleagues understand my diagnosis?
• Is my family at risk of developing MS too?
• Are there any people I need to inform about my diagnosis?
• Are there any resources that can help me lead a happy and healthy life with MS?

Other important questions

• How will my condition affect my other health conditions, if I have any?
• Will I need any extra care, aids or equipment if my condition changes and how do I get this?
• What are my options for mental health support, as dealing with a long-term condition like MS can be emotionally challenging?
• Are there any financial or practical supports available to help me manage this condition?
• Who can I contact if I have questions or concerns?

Our helpline is open for calls Monday to Friday, 10am to 4pm. Call us on 0800 783 0518. If we are not available, please leave us a voicemail and we will call you back, usually within three working days. If you’d prefer a telephone call from us at a specific time, then you can email info@ms-uk.org