What were your first symptoms of amyloidosis?

Signs and symptoms of amyloidosis may include:

• Swelling of your ankles and legs.
• Severe fatigue and weakness.
• Shortness of breath with minimal exertion.
• Unable to lie flat in bed due to shortness of breath.
• Numbness, tingling or pain in your hands or feet, especially pain in your wrist (carpal tunnel syndrome)

How does amyloidosis develop?

Amyloidosis is caused by changes in proteins that make them insoluble, leading them to deposit in organs and tissues. These amyloid proteins accumulate mainly in the tissue space between cells. Changes in proteins that make them amyloid proteins occur because of gene mutations in DNA within cells.

What blood tests detect amyloidosis?

Blood tests to look for stress and strain on the heart are useful in many forms of heart disease, including AL amyloidosis. The cardiac biomarkers that are used include troponin T or troponin I, and NT-proBNP (which stands for N-terminal pro-brain natriuretic peptide) or BNP (brain natriuretic peptide).

How do you test for amyloidosis?

A tissue sample may be taken and checked for signs of amyloidosis. The biopsy may be taken from the fat under the skin on your abdomen (fat aspirate), bone marrow, or an affected organ — such as your liver or kidney. Specialized testing of the tissue can help determine the type of amyloid deposit.

Can you live a normal life with amyloidosis?

There is no cure for patients with AL amyloidosis but more frequently patients can go into remission with drug therapy. In our experience, the majority of patients surviving the first six months can often start recovering thereafter and can typically live normal or near normal lives for years to come.

Can amyloidosis be cured?

There is not currently a cure for amyloidosis. The amyloid deposits cannot be directly removed. But there are treatments to stop more of the abnormal proteins being produced and treat your symptoms. These treatments can give your body time to gradually clear the deposits before they build up again.

How do I diagnose amyloidosis?

Amyloidosis can only be diagnosed by a positive biopsy; that is, an identification of the amyloid deposits in a piece of tissue. Tissue biopsies must be stained properly with Congo red, a dye which will color the amyloid if it is present and cause it to have a unique appearance when viewed under a special microscope.

Can blood tests diagnose amyloidosis?

Blood and/or urine tests can indicate signs of the amyloid protein, but only bone marrow tests or other small biopsy samples of tissue or organs can positively confirm the diagnosis of amyloidosis.

What is the prognosis of cardiac amyloidosis?

Prognosis varies with the type of amyloidosis and the affected organ system. Prognosis for untreated AL cardiac amyloidosis is poor, with a median survival of six months. More specifically, AL amyloidosis can be classified as stage I, II or III based on cardiac biomarkers like Nt-proBNP and cardiac troponin.

Is amyloidosis always fatal?

Amyloidosis can affect the heart, kidneys, liver, spleen, nervous system, stomach or intestines. The condition is rare (affecting fewer than 4,000 people in the United States each year), but it can be fatal.