10 Questions to Ask Your Doctor When You Are Newly Diagnosed

It is often hard to know what to ask – or even where to begin – when you have questions about a new diagnosis. Many community members on this site talk about feeling overwhelmed and nervous at their first appointment. Here are some of their tips for finding your way through the early stages of your diagnosis of narcolepsy.

Organize the thoughts in your head

The doctor should ask if you have questions or concerns. But it can be hard to ask a question if you do not know where to start. You may not know enough about your condition to know what you should be asking. It is common to feel confused about where to start.

You may also not think of a question or concern until you have left the building. This is why you often see the suggestion to write down your questions before you go to that first appointment.

A million questions with no answers

No one wants to leave an appointment feeling like they have a million questions and no answers. This can lead to more anxiety, fear, and frustration. Pile that on top of an already complicated condition like narcolepsy, and it can start quite a downward spiral.

The following list includes some common questions that may be helpful for your first few doctor/specialist appointments.

Remember, you do not have to ask all of these questions. These are ideas of questions that may apply to your life with narcolepsy. Use these as a guide to get you through those first appointments to help you build your knowledge of this diagnosis:

• What are my options for treatment and the pros/cons of each?
• What will happen if I choose not to treat my condition at this time?
• Are there dietary or supplement changes you would suggest I make?
• What are the potential side effects of my treatment options?
• How are appointments, refills, questions, or concerns handled? What are the procedures for drug refills in particular?
• How often can I expect to be seen by the doctor for my condition? Will I always see the same doctor?
• How do I access my test and lab results?
• Do I have to decide today on treatment, or can I take a week and think it over?
• If I have a question or concern between appointments, can I call the office, email, or send a message through an app?
• If I am worried or sick due to the side effects of a new medicine, should I contact you or one of my other doctors? What would you consider serious enough to call?

When you know the right questions to ask, it can be the first step to help you prepare for your journey with narcolepsy.

A new diagnosis can be scary

Living with a new diagnosis of narcolepsy can be scary. It can be hard to know what to expect. Test results, medicines, and their side effects may be hard to understand at first. Keep in mind: you are at the very start of this journey. Soon you will be an expert in your own care.

What questions do you wish you had asked at those first appointments when you were newly diagnosed? Let us know in the comments!