You're likely to start by first seeing your family doctor or a general practitioner. If your doctor suspects you may have a liver problem, such as Wilson's disease, you may be referred to a doctor who specializes in the liver (hepatologist).
How to prepare
Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be well prepared for your appointment. To prepare for your appointment, try to:
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
- Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses, recent life changes or any family history of Wilson's disease.
- Make a list of all medications, as well as any vitamins or supplements, that you're taking.
- Take a family member or friend along, if possible. Sometimes it can be difficult to absorb all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
Questions to ask
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For Wilson's disease, some basic questions to ask your doctor include:
- Do I have Wilson's disease?
- What kinds of tests do I need?
- Has Wilson's disease damaged my liver or other organs?
- Do I need treatment for Wilson's disease?
- What treatment do you recommend?
- What are the side effects of the recommended treatment?
- Are there other treatment options?
- I have these other health conditions. How can I best manage them together?
- Are there any restrictions that I need to follow?
- Should I avoid alcohol or medications that might harm my liver?
- Should I see a specialist? What will that cost, and will my insurance cover it?
- Should I see a genetic counselor?
- Should my family members be tested for Wilson's disease?
- Are there any brochures or other printed material that I can take with me? What websites do you recommend?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
Sep. 23, 2011
- Cox DW, et al. Wilson disease. In: Feldman M, et al. Sleisenger & Fordtran's Gastrointestinal and Liver Disease: Pathophysiology, Diagnosis, Management. 9th ed. Philadelphia, Pa.: Saunders Elsevier; 2010. http://www.mdconsult.com/books/page.do?eid=4-u1.0-B978-1-4160-6189-2..00075-5&isbn=978-1-4160-6189-2&uniqId=270505025-3#4-u1.0-B978-1-4160-6189-2..00075-5. Accessed Aug. 2, 2011.
- Ferri FF. Wilson's disease. In: Ferri FF. Ferri's Clinical Advisor 2011: Instant Diagnosis and Treatment. Philadelphia, Pa.: Mosby Elsevier; 2011. http://www.mdconsult.com/books/about.do?eid=4-u1.0-B978-0-323-05610-6..C2009-0-38600-6--TOP&isbn=978-0-323-05610-6&about=true&uniqId=230100505-53. Accessed Aug. 2, 2011.
- Huster D. Wilson disease. Best Practice & Research Clinical Gastroenterology. 2010;24:531.
- Wilson disease. National Institute for Diabetes and Digestive and Kidney Diseases. http://digestive.niddk.nih.gov/ddiseases/pubs/wilson/. Accessed Aug. 2, 2011.
- Kaplan MM. Treatment of Wilson disease. http://www.uptodate.com/home/index.html. Accessed Aug. 2, 2011.
- Kaplan MM. Diagnosis of Wilson disease. http://www.uptodate.com/home/index.html. Accessed Aug. 2, 2011.
- Picco MF (expert opinion). Mayo Clinic, Rochester, Minn. Aug. 11, 2011.
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