Preparing for your appointment

You may be referred to a doctor who specializes in brain and nervous system conditions (neurologist).

It's a good idea to be well-prepared for your appointment. Here's some information to help you get ready, and what to expect from your doctor.

What you can do

  • Write down a list of concerns, making a note of when you first started having them.
  • Bring your child's or your complete medical and family history with you, if your doctor doesn't already have it.
  • Write down key personal information, including any major stresses or recent life changes.
  • Make a list of all medications, vitamins or supplements that you're taking.
  • Bring photographs of other family members — living or deceased — who may have had similar signs and symptoms.
  • Write down questions to ask your doctor.

Your time with your doctor is limited, so preparing a list of questions can help you make the most of your time together. List your questions from most important to least important in case time runs out. For neurofibromatosis, some basic questions to ask your doctor include:

  • What type of neurofibromatosis do you suspect?
  • What tests do you recommend?
  • What treatments are available?
  • How should my child be monitored for changes in his or her condition?

In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask other questions that occur to you.

What to expect from your doctor

Your doctor is likely to ask you a number of questions. Being ready to answer them may allow time later to cover other points you want to address. Your doctor may ask:

  • When did you first begin noticing signs or symptoms? Have they changed over time?
  • Is there a family history of neurofibromatosis?