Preparing for an MS appointment. Everything you need to know.
So you’ve got an appointment coming up with your multiple sclerosis care team. Whether it’s your first or 50th appointment it’s always good to be prepared.
Appointments are a two way street and to get the most out of them you need to be an engaged, active participant. We know, we know. That might sound like a big ask when some days it’s just about all you can do to get yourself out of your dressing gown.
But, the good news is that it doesn’t have to be difficult. Here are some easy ways you can get yourself ready and have a really productive appointment.
Everything you need to know about preparing for an MS appointment
Before your appointment
Give yourself enough time to prepare.
It sounds obvious but don’t be trying to get ready for it as you’re dashing out the door or just before you go to bed. We all have enough things to worry about without extra time pressure.
Think about when you have the most focus, energy and clear thought in the day and set aside time to prepare then.
Build a picture of how you’ve been feeling since your last appointment
This is the most important part and is necessary so your doctor or nurse can make recommendations about how to improve or maintain your condition.
You may have been recommended to keep a symptom diary or MS journal. Now is the time for this to shine. Using the information you’ve recorded to tell your doctor exactly what has happened to you.
If you haven’t been recording your symptoms on an ongoing basis you can just do it from memory. We’ve written an article about MS journaling if you’re interested in learning more.
Your health team will want to know about:
- What symptoms have you experienced
- Are these symptoms new, or have they changed in their severity or presentation
- Talk about your mental health and how you’re feeling
- How regularly you've been taking any medication (be honest!)
- Side effects
- Have you been using any other treatments, supplements or complementary/alternative therapies
- Anything else that you’ve read or heard about that you’re interested in exploring
- Have you noticed anything that is triggering or improving your symptoms
- Big life events coming up e.g. pregnancy, moving elsewhere, new job
- Anything else you need support with for example, finances, family and work
Give yourself enough time to get there
It sounds obvious and it might be somewhere you’ve been lots of times before but make sure you leave in good time.
Make time to get a cup of coffee, do some meditation or just go over your key discussion points. This will help you go in with a clear mind and let you focus on the conversation.
During your appointment
Tell your health exactly what’s going on
You doctor or MS nurse is an extremely skilled professional but they aren’t a mindreader. You’re the expert on the subject of your own MS and how you’re experiencing it. That means it’s your responsibility to share that knowledge with them.
That way they can bring in their years of professional experience and together work out the best possible solutions for you.
Share with them the information you prepared about your symptoms, treatment and lifestyle. If you’re using Emilyn or other MS tracking tools you can impress them with your graph showing symptoms over time.
Don’t shy away from any ‘sensitive’ or ‘taboo’ topics
Sexual problems, continence, mental health. These are very common with MS but it doesn’t make it any easier to talk about sometimes. It’s a cliché but your health team really will have seen and heard it all before. You won’t shock them and they should be able to help or direct you to someone who can.
Don’t worry about getting emotional
The topics you’ll be talking about can be challenging. It might be getting test results or having to talk about your mental health or long term prognosis. That’s natural so take your time and breathe. Try to keep things in perspective though so you’re able to take in what’s being said.
Ask for repetition or clarification if you need it
Doctors can sometimes forget that not everyone understands their long medical terms. If you’re not sure what they mean by something ask them to explain it to you. If you’re struggling with cognition let them know at the beginning of the appointment so they know how to speak with you.
Take someone with you
Linked to taking things in, it’s really helpful to take someone with you. You will often be given a lot of information at your appointments so having someone else to take notes can help. They can also help you express yourself or prompt you on your notes or questions if you’re having a fuzzy brain day.
Take whoever you like, just make sure it’s someone who you trust and can be open in front of. If you can’t take someone with you, make sure you’re able to take notes or ask if it’s ok that you record the appointment to remember what has been said later.
Be prepared to make decisions
If you’re discussing treatment or therapy options you will have the final decision. Your health team can make recommendations and tell you about side effects and outcomes but only you will be able to make the decision.
You won’t need to make a decision there and then in your appointment. You can go home and think about it and discuss it with family and friends if needed.
There is an excellent resource from the UK MS Society ‘Our Treatment Stories’ where people discuss how they made their decision about disease modifying therapies.
You can also ask for information to take home with you to do some research in your own time.
If you’re researching online, we’ve written an article advising the most trustworthy places to look.
Ask for your medical records if you want them
No matter which medical system you are part of you are entitled to have access to your medical records. They can be useful to have so if you’re involved in other medical services you can be clear about your condition and treatment. There’s space in Emilyn to securely upload and store them to keep them safe.
Be clear about what to expect next
This will depend on your healthcare system but find out what’s next. If you’ve been diagnosed for a number of years it might be nothing until you see them next. If you’ve discussed referrals to other services (mental health, physiotherapy, occupational therapy etc) check how that will happen.
Own your MS experience
What you’re experiencing and how you feel is your reality. Don’t ever worry about the way you’re feeling being trivial or unimportant. If you ever feel like you’re being misunderstood or dismissed take the time to explain that.
After your appointment
It’s completely normal to feel exhausted and drained after an appointment. They take a lot of focus and emotional energy. If you can, take some time to relax, have a cup of tea and reflect.
Whilst it’s still fresh if your mind, note down the key points of your discussion. If you made notes in your meeting or recorded it you can use these and just neaten them up or make them understandable.
You should make notes about things like:
- The date of your next appointment(s)
- Changes to treatment or options to consider
- Suggestions about how to manage symptoms
- Reading material or resources
If you want to make preparing for your next MS appointment easier you can try downloading Emilyn. It's a free MS Companion that's used by over 30,000 people with MS worldwide.