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?
Dec. 24, 2015
- Ferri FF. Neurofibromatosis. In: Ferri's Clinical Advisor 2016. Philadelphia, Pa.: Mosby Elsevier; 2016. https://www.clinicalkey.com. Accessed Nov. 11, 2015.
- Neurofibromatosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm. Accessed Nov. 11, 2015.
- Korf BR. Neurofibromatosis type 1 (NF1): Pathogenesis, clinical features, and diagnosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
- Evans DG. Neurofibromatosis type 2. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
- Yohay K, et al. Schwannomatosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
- Korf BR. Neurofibromatosis type 1 (NF1): Management and prognosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
- Woodrow C, et al. Neurofibromatosis. Orthopaedics and Trauma. 2015;29:206.
- Goldblum JR, et al., eds. Benign tumors of peripheral nerves. In: Enzinger and Weiss's Soft Tissue Tumors. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 2014. https://www.clinicalkey.com. Accessed Nov. 10, 2015.
- AskMayoExpert. Neurofibromatoses. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2015.
- Slattery WH. Neurofibromatosis type 2. Otolaryngologic Clinics of North America. 2015;48:443.
- Hirbe AC, et al. Neurofibromatosis type 1: A multidisciplinary approach to care. The Lancet Neurology. 2014;13:834.
- Flint PW, et al., eds. Stereotactic radiation treatment of benign tumors of the cranial base. In: Cummings Otolaryngology. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 20154. https://www.clinicalkey.com. Accessed Nov. 10, 2015.
- Riggin EA. Allscripts EPSi. Mayo Clinic, Rochester, Minn. Sept. 18, 2015.