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Talking MS with your healthcare team
Talking MS progression with your HC team

Discussing Multiple Sclerosis (MS) symptoms and being open with your MS specialist, neurologist, or MS nurse doesn’t always feel easy – but it can be very helpful. This is especially true when it comes to openly sharing any changes in symptoms you’ve noticed, no matter how small they may seem.

Changes in the type and severity of MS symptoms you experience can happen over time, so progression of the condition may not be that noticeable at first. However, it is important to look out for any signs of worsening symptoms, no matter how subtle, and discuss them with your healthcare team as soon as possible, to ensure you are still getting the right care for you.

To help you have a positive and informed discussion, here are some tips to prepare for conversations with a healthcare professional (HCP) about your symptom changes:

1- Be prepared

Setting aside some time before the appointment with your healthcare professional can help make the best use of the time available to think about the questions that you may have. If you keep a diary of your symptoms or use another form of tracking tool, this could involve going back through the entries since your last appointment and noting any symptoms that may have changed during that time or any concerns that you may have1.

Another idea is to think back to a specific time a few months or a year ago (such as a family event) and make a note of any symptoms which may be different now. You might also want to check in with those closest to you to see if they’ve spotted any changes in symptoms which you might have missed.

2- Steer the discussion

Think about the appointment as a partnership: equal parts yours and your neurologist’s or MS nurse’s. It’s ok to offer your view for how you want to conduct the discussion. Some ideas could be1,2:

  • At the beginning of the appointment, set out your main questions and what you want to cover in the appointment.
  • Ask your MS specialist, neurologist or MS nurse if it’s ok to record the conversation, so you can listen back later.
  • Bring someone with you for support and as a second pair of ears.

3- Ask for clarifications on medical terminology where needed3

Sometimes healthcare professionals might use complicated language when talking about SPMS. If they do, it’s completely fine to ask them to explain – that’s what they’re there for! We’ve also put together a SPMS vocabulary ‘cheat sheet’, to help translate some of these terms:

  • MS progression – the transition from relapsing remitting multiple sclerosis (RRMS) to secondary progressive multiple sclerosis (SPMS see below).  
  • RRMS – Relapsing remitting multiple sclerosis: Relapses are an occurrence of a new or worsening of an old symptom, lasting more than 24 hours.
  • SPMS – Secondary progressive multiple sclerosis: A phase of MS in which disability and symptoms gradually worsen over time. SPMS typically follows an initial stage of relapsing remitting multiple sclerosis (RRMS).
  • Autoimmune – MS is a type of autoimmune disease, which means that the body’s own immune system is attacking a part of the body.
  • Neurons –The nerve cells that carry messages between the central nervous system and the organs and limbs of the body.
  • Axons – The part of the neuron along which messages travel to be transferred to another part of the body.
  • Myelin – The coating that allows messages to be transmitted quickly and efficiently. Myelin becomes damaged in people with MS.
  • Inflammation – The activation of the body’s immune system, which in MS causes damage to the myelin.
  • Demyelination – The process by which the myelin is damaged as a result of inflammation.

For a more detailed ‘dictionary’ on MS terminology, please click here.

4- Discuss any changes in your symptoms

Subtle worsening in the type, severity and frequency of symptoms, whether visible or invisible, physical or cognitive, can be signs of MS progression4 . These signs are individual to each person and often happen slowly, so can be hard to detect.

If symptoms do seem to be getting slowly worse, it is important to take action as soon as possible. As MS can change over time, the kinds of treatment and support needed – both practical and emotional – might change too. Asking your MS specialist, neurologist, or MS nurse for guidance can help ensure you are still getting the right care for you.

 

References:

  1. Multiple Sclerosis Trust. Making the most of appointments. Available at: https://www.mstrust.org.uk/about-ms/newly-diagnosed/making-most-appointments. Accessed April 2020.
  2. MS Society. Healthcare Appointments. Available at: https://www.mssociety.org.uk/care-and-support/health-and-social-care/health-care/appointments. Accessed April 2020.
  3. Multiple Sclerosis Trust. A-Z of MS. Available at: https://www.mstrust.org.uk/a-z. Accessed April 2020.
  4. MS Society. Secondary progressive MS. Available at: https://www.mssociety.org.uk/about-ms/types-of-ms/secondary-progressive-ms. Accessed April 2020.