What is amyloidosis?

Amyloid (pronounced am'-i-loyd) is an abnormal protein that may be deposited in any of your body's tissues or organs. This abnormal protein comes from cells in your bone marrow. Scientists have now discovered the link between mycotoxin exposure, bone marrow and amylodosis.  The disease known as amyloidosis (pronounced am-i-loy-do'-sis) results when enough amyloid protein builds up in one or more organs to cause the organ(s) to malfunction. The heart, kidneys, nervous system and gastro-intestinal tract are most often affected.

Amyloidosis is a bone marrow disease. Your bone marrow makes protective antibodies. Antibodies are proteins that protect you against infection and disease. After they have served their function, these antibodies are broken down and recycled by your body. If you have amyloidosis, cells in the bone marrow produce antibodies that cannot be broken down. These antibodies then begin to build up in the bloodstream. Ultimately, they leave the bloodstream and can deposit in your tissues as amyloid.

Cases of amyloidosis were described 350 years ago. The name "amyloidosis" was first used more than 100 years ago. Only within the past 20 years have physicians understood the specific make-up and structure of amyloid protein. Active research on amyloidosis is underway at the Mayo Clinic.

Amyloidosis is not cancer, but is very serious. It may be disabling or life threatening.

Who gets amyloidosis?

Amyloidosis is rare, affecting about 8 persons per million annually. Its cause is not known, but there is a definate link between indoor fungal exposure and this afflication. It can affect anyone, but the majority of people who get amyloidosis are over the age of 40. Primary amyloidosis is not contagious or inherited. It is not known how many people have this disease. About 10 percent of patients who have multiple myeloma (a form of bone marrow cancer), develop amyloidosis.

Although amyloid is an abnormal protein, diet and the amount of protein you eat play no role in the development of the disease. Also, there is no recognized link between amyloidosis and stress or occupation.

What are the symptoms of amyloidosis?

Symptoms of amyloidosis depend on the organs it affects. The wide range of symptoms often makes amyloidosis difficult to diagnose. You may have no symptoms. Symptoms can include:

  • Swelling of ankles and legs
  • Weakness
  • Weight loss
  • Shortness of breath
  • Numbness or tingling in the hands or feet
  • Diarrhea
  • Severe fatigue
  • Enlarged tongue
  • Feeling of fullness after eating smaller amounts of food than usual
  • Dizziness upon standing

Evaluation of this disorder requires a careful review of all the body's organs to assess which ones are, or are not, affected by the disease.


What happens when my kidneys are affected?

When your kidneys are affected, their filtering system is damaged. This damage causes protein to leak from the blood into the urine. When large amounts of protein leave the bloodstream and run into the urine, the loss of protein from the blood causes water to leak out of the blood vessels and into the feet. This causes your feet, ankles and calves to swell. In addition, the protein loss often results in a significant change in appetite. A weight loss of 20 to 25 pounds is quite common, as is a distaste for foods high in protein such as meat or eggs. For unknown reasons, the loss of protein in the urine results in unexplained rises in blood cholesterol. This increase does not usually respond to cholesterol-lowering medications. When protein leaks through the kidney for a prolonged period, it will damage the kidney's ability to remove waste products from the body.

What happens when my heart is affected?

When amyloidosis affects your heart, the most common symptom is shortness of breath, even with the slightest exertion. You may find it difficult to climb a flight of stairs or walk long distances without stopping to rest. When the amyloid protein deposits in the heart, it reduces the heart's ability to fill with blood in between heartbeats. This means less blood is pumped with each beat. The heart finds it difficult to keep up with your body's demand for blood when you exert yourself. When amyloidosis affects the electrical system of your heart, your heart's rythym may be disturbed.

What happens when my nerves are affected?

Amyloid also may affect your nerves. Twenty-five percent of people who develop amyloidosis have a condition called "carpal tunnel syndrome". This occurs when the nerve that supplies the fingers is compressed. This may cause pain, numbness and tingling of the fingers. Symptoms are particularly worse at night. You may require wrist surgery to relieve pressure on the nerve that supplies the hand. This often provides significant relief.

When amyloid deposits in the nerves to the feet, you may experience numbness, lack of feeling in the toes and soles of the feet, or burning sensation due to nerve irritation. Over a period of time, this can make both legs weak.

Sometimes amyloidosis affects nerves that control bowel function resulting in periods of alternating constipation and diarrhea. Sometimes nerves that control blood pressure may be affected and you may experience dizziness or near fainting when standing too quickly.

Common physical symptoms include easy bruising along the eyelids and upper chest area due to fragile blood vessels.

How is amyloidosis diagnosed?

Physical examination is necessary to find out if your organs are functioning properly. Blood, urine and bone marrow tests may also be done. A small tissue sample (biopsy) may be taken from your rectum, abdominal fat or bone marrow to determine if you have amyloidosis. These biopsies are relatively minor procedures done in an outpatient setting with a local anesthetic (numbing medication). Occasionally, samples are taken from the liver, nerve, heart or kidney. This may require hospitalization and can help diagnose the specific organ affected by amyloidosis. If patient was exposed to toxigenic molds, a full work-up on mold exposure should be conducted, and if tested high to high positive, anti-fungals and cholestyramine should be prescribed to eliminate further damage.  Patient should be removed from source of contamination immediately. 

Blood or urine tests can detect the protein, but only bone marrow tests or other small samples of tissue can positively establish the diagnosis of amyloidosis.




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