Huntington's disease

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Preparing for your appointment

By Mayo Clinic staff

Your first appointment may occur because you or a loved one has noticed that you have some signs and symptoms of Huntington's disease, or it may be because you know one of your parents had the disease. You can see your primary care physician initially, but if you're diagnosed with Huntington's disease you'll likely be referred to a neurologist — a doctor who specializes in treating nervous system disorders — for your care.

Because appointments can be brief, and there's often a lot of ground to cover, it's a good idea to be well prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from your doctor.

What you can do

  • 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 or recent life changes.
  • Make a list of all medications, as well as any vitamins or supplements, that you're taking.
  • Ask a family member or friend to join you. Sometimes it can be hard to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
  • Write down questions to ask your doctor.

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 Huntington's disease, some basic questions to ask your doctor include:

  • Are my signs and symptoms caused by Huntington's disease?
  • Are there any other possible causes for my symptoms?
  • What kinds of tests do I need to confirm the diagnosis?
  • What treatments are available, and which do you recommend?
  • What types of side effects can I expect from treatment?
  • Are there any clinical trials available to me?
  • What types of supportive care, such as occupational therapy, are available to me?
  • Are there any dietary or activity restrictions that I need to follow?
  • Will I be able to have children? What's my risk of passing it on to them?
  • How long will I be able to live on my own?
  • Are there any brochures or other printed material that I can take home with me? What Web sites do you recommend visiting?

In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment any time you don't understand something.

What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:

  • When did you first begin experiencing symptoms?
  • Have your symptoms been continuous, or intermittent?
  • Has anyone in your family ever been diagnosed with Huntington's disease?
  • Are you having trouble performing any daily tasks?
  • Has anyone in your family died young?
  • Is anyone in your family in a nursing home?
  • Is anyone in your family fidgety or moving all the time?
  • Do you feel sad all of the time?
References
  1. Huntington's disease: Hope through research. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/huntington/detail_huntington.htm. Accessed March 27, 2009.
  2. Huntington's disease. The Merck Manuals Online Medical Library: The Merck Manual for Healthcare Professionals. http://www.merck.com/mmpe/sec16/ch221/ch221e.html#sec16-ch221-ch221e-49. Accessed March 27, 2009.
  3. SuttonBrown MA, et al. Huntington disease: Clinical features and diagnosis. http://uptodate.com/home/index.html. Accessed March 12, 2009.
  4. Learning about Huntington's disease. National Human Genome Research Institute. http://www.genome.gov/page.cfm?pageID=10001215. Accessed March 27, 2009.
  5. Trushina E, et al. Mutant huntingtin inhibits clathrin-independent endocytosis and causes accumulation of cholesterol in vitro and in vivo. Human Molecular Genetics. 2006;15:3578.
  6. Katsuno M, et al. Getting a handle on Huntington's disease: The case for cholesterol. Nature Medicine. 2009;15:253.
  7. FDA approves first drug for treatment of chorea in Huntington's disease. U.S. Food and Drug Administration. http://www.fda.gov/bbs/topics/NEWS/2008/NEW01874.html. Accessed March 28, 2009.
  8. Kim SU. Stem cell-based cell therapy in neurological diseases: A review. Journal of Neuroscience Research. In press. Accessed March 28, 2009.
  9. ACR16. Neurosearch.com. http://www.neurosearch.com/Default.aspx?ID=752. Accessed March 28, 2009.

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May 8, 2009

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