Having the “SPMS talk” with your doctor

Honest conversations are an important part of any doctor-patient relationship but being able to communicate with your doctor is especially important when it comes to disease progression.

Secondary progressive MS (SPMS) is a disease stage that can follow on from living with relapsing-remitting MS (RRMS) for a number of years. It is characterized by a change in the way the disease behaves; rather than periods of inflammation resulting in relapses, the nerves themselves begin to become damaged and this causes a build-up of symptoms. Approximately 50% of people with RRMS will transition to SPMS after 19 years. But it’s important to remember that MS doesn’t suddenly become progressive; symptoms can subtly progress over time independent of relapses.

While it can be scary to think about reaching a progressive stage, it’s important to learn about what it might mean and what the signs and symptoms are, so you know what to look out for and how to deal with it.

In the same way that you have house insurance in case something happens to your home, it makes sense to have a plan in place with your doctor in case you start to notice your disease progressing. Having a plan can be reassuring and help you not to worry as much about the possibility of your disease progressing.

The “SPMS Talk”

One of the best ways to prepare for the possibility of developing SPMS is to have a specific talk about it with your doctor, during which they can explain more about this form of the disease, provide you with information on the signs and symptoms to look out for and you can ask any questions you have. You can then work together to create a plan for what to do if you start to notice any of the signs and symptoms, and what the next steps are likely to be in that circumstance.

Approaching the topic

It’s all very well deciding to have “The Talk” but how do you approach it with your doctor? Some doctors may be ahead of the curve and decide to put time aside to talk about SPMS with you themselves, but for many people this will be a discussion you need to as, which can be daunting. In either circumstance, talking about the possibility of your disease progressing can feel scary and emotional, and on the day, it would be totally normal to feel overwhelmed.

To help, here are some top tips for having the “SPMS Talk” with your doctor:

Think about it as a partnership: remember, as much as the doctor is helping you, you are also helping them to understand more about your condition and about the disease itself as well. Doctors can’t know everything about every disease, so going on the disease journey with you will actually help them learn more about MS. This means you can, and should, share all the detail with them, ask all the questions you have and spend time ensuring you are both on the same page.

Try to separate your emotions: from discomfort and stress, to sadness and anger, in a difficult personal discussion about your future with MS it’s likely you will feel a range of emotions and it can be hard to control them. In order to make the most of the conversation however, it’s best to try and separate your emotions from the facts as best as possible. While you’re having the talk, concentrate on the science. Ask them to show you diagrams if possible and focus on understanding what they are saying, instead of applying it to yourself. This will ensure you have all the information you need and you can spend time fully digesting what it means after the appointment. Remember, you can also speak to your doctor about getting emotional support if you need it.

Prepare beforehand: it’s always worth preparing for a doctor’s appointment but if you’re planning to have a talk about SPMS, preparing is vital. Writing a tick list of questions and talking points will ensure you cover everything and can also be a good focus point if you start to feel emotional during the appointment.

Record the conversation and/or bring someone with you: it can be difficult to take in all the information from a doctor’s appointment at the same time as making sure you are taking all the notes you need for the future. Ask the doctor if you can record the conversation on your phone or bring someone with you who can provide an extra pair of ears and take notes. That way you will be able to fully focus on the conversation without the pressure of writing down all of the information.

Find a doctor you feel comfortable with: if you still don’t feel comfortable enough to talk to your doctor about SPMS, perhaps you should consider finding a doctor you feel more able to talk to.

Keeping track

Once you’ve had the initial conversation about SPMS with your doctor, you’ll have a better idea about what signs and symptoms you should be keeping an eye-out for. Changes in your symptoms and in your day-to-day activities, can provide clues as to what’s going on with your MS and whether your current treatment is working for you. It’s therefore a good idea to monitor your symptoms closely and check in with you doctor regularly.

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