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The symptoms of amyloidosis can vary widely, depending on the specific organ or number of organs affected by the buildup of amyloid protein(s). People with amyloidosis may experience the symptoms or signs listed below. Sometimes, people with amyloidosis do not have any of these changes. Or, the cause of a symptom may be another medical condition. All of these factors can make diagnosing amyloidosis challenging because the symptoms may be similar to those of numerous other diseases and conditions that are more common than amyloidosis.
Symptoms of amyloidosis are usually determined by the organ or function that is affected by the protein buildup. For example:
Kidneys. Amyloidosis in the kidneys will reduce the kidneys’ ability to filter waste and break down proteins. As a result, large amounts of protein may be found in the urine, causing “foamy” urine. The kidneys may even stop working. Decreased urine output and changes in creatinine clearance tests, a blood test to measure kidney function, may be present.
Liver. Amyloidosis may cause the liver to grow larger and affect its ability to function normally. This may cause pain in the upper abdomen, swelling in the abdomen, and changes in liver enzymes that can be found using blood tests.
Heart. Amyloidosis of the heart may cause an irregular heartbeat, called an arrhythmia; enlarge the heart; and cause poor heart function, resulting in fluid buildup, an irregular heartbeat, shortness of breath, or chest pain.
Gastrointestinal tract. Amyloidosis of the gastrointestinal tract may cause problems with the digestion and absorption of food nutrients, diarrhea or constipation, bleeding, blockages, and a thickened tongue, called macroglossia. It may also cause problems with the esophagus, including gastroesophageal reflux disease (GERD).
Thyroid gland. Amyloidosis of the thyroid gland may cause goiter, a noncancerous swelling of the thyroid gland.
Lungs. Amyloidosis of the lungs may cause problems with breathing, including shortness of breath.
Nervous system. Disorders of peripheral nerves are the most common neurological complications of amyloidosis. Patients may experience painful paresthesias (unusual sensations), numbness and balance difficulties, vomiting, diarrhea, constipation, sweating, or sexual problems. Numbness, tingling, or weakness in the arms or legs may develop. This condition is known as peripheral neuropathy. Carpal tunnel syndrome may also occur.
Other general symptoms of amyloidosis include:
Fatigue, which is extreme exhaustion or tiredness. It is a common problem for people with amyloidosis. Patients who feel fatigue often say that even a small effort, such as walking across a room, can seem like too much.
Unexplained weight loss
Anemia, which is a low level of red blood cells
Weak hand grip, which may arise from carpal tunnel syndrome
Skin changes, such as a rash around the eyes
Risk of infection.People with AL amyloidosis are at increased risk of getting an infection. This is because this type of amyloidosis causes abnormalities in plasma cells. Plasma cells produce immunoglobulins, which help fight infection. A condition called leukopenia occurs when the body does not have enough white blood cells and is less able to fight off infections. Some white blood cells, called neutrophils, can destroy harmful bacteria and fungi. People with leukopenia or neutropenia, a low level of neutrophils, are more likely to develop a serious infection.
If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.
If amyloidosis is diagnosed, relieving symptoms remains an important part of your care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.
The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu to choose another section to continue reading this guide.
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