What Increases Your Risk

Things that increase your risk for Paget's disease include:

• Family history. If your parents, brothers, or sisters have Paget's disease, you are more likely to develop the disease than if no one in your family has it.
• Age. Paget's disease is most common in people older than 50 and is unusual in people younger than 40.²

When To Call a Doctor

Call your doctor immediately if you have Paget's disease and you notice signs of complications, such as:

• Sudden hearing or vision loss. As the bones in the head enlarge from Paget's disease, nerve damage can occur and can lead to permanent loss of hearing or vision.
• Weakness or numbness in your face. As the bones in the head enlarge from Paget's disease, they can damage the nerves in the face.
• Shortness of breath or severe swelling, particularly in the legs or the abdomen. This could also be a sign of heart failure.
• Weakness in both legs with loss of bladder or bowel control. This is a symptom of a specific type of nerve root pressure (compression) called cauda equina syndrome, which can result from rapid bone growth putting pressure on nerves from the spinal cord. This is a serious problem and requires immediate medical care.

Call your doctor if:

• You have symptoms of Paget's disease-such as bone pain or your skull getting larger (your hat size may increase)-and are concerned that you may have the disease.
• You have Paget's disease and have symptoms of osteoarthritis in a joint.
• You have symptoms of a pinched nerve in your back. The most common symptom of a pinched nerve is leg pain and other nerve-related (neurological) symptoms, such as tingling, weakness, or deep muscle spasms.
• You have new pain or pain that is getting worse, especially in one area of a bone or following an injury. Pain in one area may mean that a bone is broken or, rarely, may be a symptom of bone cancer.

Watchful waiting

Watchful waiting is a wait-and-see approach. If you get better on your own (or if you don't get worse), you won't need treatment. If you get worse, you and your doctor will decide what to do next. Watchful waiting is fine for most symptoms of Paget's disease. But if you have Paget's disease and have symptoms that could be caused by a complication of this disease, do not wait to get treatment. Many experts recommend that you get treatment if you have Paget's disease in a location that could cause complications, such as in the spine, even if you are not having symptoms.

Who to see

Health professionals who can diagnose and treat Paget's disease include:

• General practitioner or family doctor.
• Internist.
• Endocrinologist.
• Rheumatologist.

Health professionals who can diagnose Paget's disease but usually do not treat it include:

• Orthopedist or orthopedic surgeon.
• Nurse practitioner.
• Physician assistant.

When Paget's disease is diagnosed, you may be referred to:

• An endocrinologist.
• An orthopedist, if you have a severe bone deformity, a broken bone, or severe osteoarthritis.
• An ophthalmologist, if you have vision problems.
• An otolaryngologist, if you have hearing problems.
• A rheumatologist, if you have joint problems.
• A physical therapist, if you need to start an exercise program to gain strength and endurance.

To prepare for your appointment, see the topic Making the Most of Your Appointment.