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Symptoms of AL Amyloidosis

Posted on April 01, 2021
Medically reviewed by
Todd Gersten, M.D.
Article written by
Brooke Dulka, Ph.D.

  • Amyloid light-chain (AL) amyloidosis can cause symptoms in many parts of the body, including the joints, skin, digestive system, and nervous system.
  • More serious symptoms are the result of abnormal protein buildup within specific organs, such as the heart or kidneys.
  • If left untreated, symptoms of AL amyloidosis may progress to organ failure and death.

One day, you begin to cough and experience shortness of breath without any apparent explanation. Soon, your feet and ankles begin to swell. Although careful testing will need to be done before a diagnosis can be made, these may be early symptoms of amyloid light-chain amyloidosis.

AL amyloidosis (also called primary amyloidosis) is the most common form of amyloidosis, and there are about 4,500 new cases diagnosed every year in the U.S. In AL amyloidosis, plasma cells produce immune proteins known as light chains that are abnormal and become misfolded in tissues. Symptoms of AL amyloidosis are caused by light-chain protein accumulation in tissues and organs.

Read more about the causes, risk factors, and prevalence of AL amyloidosis.

What Causes AL Amyloidosis Symptoms?

The symptoms associated with AL amyloidosis result from amyloid protein accumulation and deposits, known as amyloid fibrils. Symptoms vary from person to person. Symptoms can also range from mild to severe.

The more general symptoms of AL amyloidosis include:

  • Abnormal bleeding
  • Urinary incontinence
  • Blood in the urine
  • Urinary tract infections
  • Dizziness
  • Erectile dysfunction
  • Fainting
  • Fatigue
  • Hoarseness
  • Muscle weakness
  • Shortness of breath
  • Stiff joints
  • Trouble sleeping

Symptoms of AL Amyloidosis in the Organs

AL amyloidosis is a serious condition because light-chain proteins misfold and build up within essential body organs. These organs include the kidneys, heart, gastrointestinal system, and nervous system. The kidneys and heart are the most commonly affected organs, while neuropathic symptoms (symptoms in the nervous system) are less common.

As AL amyloidosis progresses, symptoms become much more dangerous as critical organs are affected. Organ failure can be fatal. Thus, it is important to recognize all of the signs and symptoms of AL amyloidosis before it progresses too far.

Kidneys

One of the most common and early symptoms of AL amyloidosis is swelling in the body, most notably the feet and ankles. This swelling is typically a sign of kidney damage.

When light-chain protein deposits primarily form in the kidneys, the condition is called renal AL amyloidosis. (Renal means related to the kidneys.) Chronic kidney disease is common in people with AL amyloidosis.

Symptoms of renal AL amyloidosis can include:

  • Decreased urine output
  • Frothy or foamy urine
  • Blood in urine
  • Swelling in the lower legs or abdomen
  • Sudden gain in body weight
  • Loss of appetite
  • Tiredness

When amyloid deposits get to the point where the kidneys lose their ability to purify blood, this can lead to renal failure. In these cases, end-stage kidney disease occurs, and kidney dialysis is often necessary.

Heart

Light-chain amyloid deposits also occur in the heart. This is referred to as AL cardiac amyloidosis or stiff heart syndrome.

The symptoms associated with amyloid protein deposits within the heart include:

  • Shortness of breath
  • Fatigue
  • Irregular heartbeat (arrhythmia)
  • Heart palpitations
  • Lightheadedness
  • Dizziness

When the heart tissues thicken, heart failure can occur. This is why early diagnosis is so important.

Gastrointestinal System

Sometimes, protein accumulation can occur in the gastrointestinal, or digestive, system. The organs of this system include the stomach, intestines, mouth, esophagus, and anus. Amyloid deposits in the gastrointestinal system can cause the following symptoms:

  • Weight loss
  • Abdominal pain and swelling
  • Blood in the stool and rectal bleeding
  • Constipation
  • Diarrhea
  • Difficulty digesting food
  • Excessive gas
  • Gastric reflux
  • Early satiety (feeling full after eating only a little)
  • Difficulty chewing or swallowing
  • Enlarged tongue or tongue pain
  • Nausea and loss of appetite
  • Vomiting

Nervous System

Less commonly, AL amyloidosis can affect the nervous system. This includes the central nervous system (the brain and spinal cord) and the peripheral nervous system (all of the nerves in the rest of the body).

Symptoms of AL amyloidosis within the nervous system include:

  • Pain, numbness, and tingling — particularly in the hands, feet, and lower legs
  • Changes in blood pressure and heart rate
  • Erectile dysfunction
  • Diarrhea
  • Nausea
  • Dizziness after standing too quickly
  • Loss of sensitivity to temperature
  • Confusion
  • Headache
  • Loss of sense of taste
  • Memory problems
  • Vision problems

Other Symptoms

Since light-chain protein can build up anywhere in the body, a very wide array of symptoms are possible. Other symptoms seen in cases of AL amyloidosis include:

  • Carpal tunnel syndrome
  • Bruising easily (particularly around the eyes)
  • Enlargement of the shoulders or other joints due to swelling
  • Blood-filled blisters
  • Crumbling, brittle nails
  • Ecchymoses (flat, bluish-purple spots on the skin)
  • Hair loss
  • Jaundice (yellowing of the skin or eyes)
  • Patches of thickened, itchy skin
  • Petechiae (small red spots on the skin)
  • Waxy bumps on the eyelids, neck, groin, or anal areas
  • General pain

The Importance of Early Diagnosis

If left untreated, symptoms of AL amyloidosis may progress to organ failure and death. This is why treatment is so important. But first, a diagnosis is necessary. Unfortunately, the diagnostic process can be complex and lengthy. Timely diagnosis through blood and urine tests, imaging techniques such as magnetic resonance imaging (MRI) or echocardiograms, bone marrow biopsies, and biopsies of tissues and organs can decrease the time to treatment.

Treatment as early as possible is essential to improve the quality of life of those with AL amyloidosis.

Read more about treatment options for AL amyloidosis.

Talk With Others Who Understand

MyAmyloidosisTeam is the social network for people with amyloidosis and their loved ones. On MyAmyloidosisTeam, members come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.

Are you living with AL amyloidosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Brooke Dulka, Ph.D. is a freelance science writer and editor. She received her doctoral training in biological psychology at the University of Tennessee. Learn more about her here.

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