Amyloid light-chain (AL) amyloidosis, also called primary amyloidosis, is the most common form of amyloidosis. Its symptoms can be difficult to recognize because they vary depending on which organs are affected.

This article explains which AL amyloidosis symptoms to watch for, why early diagnosis is so tricky, and when it’s time to talk to a doctor.

What Are the Early Symptoms of AL Amyloidosis?

AL amyloidosis affects mostly men and usually starts to appear in adults aged 60 and older. At first, symptoms may seem vague or random. They often include:

Some people may also experience carpal tunnel syndrome, which may appear before other signs of AL amyloidosis emerge. This condition happens when amyloid deposits compress a nerve in your wrist, causing numbness and tingling in your fingers.

In fact, several MyAmyloidosisTeam members have reported carpal tunnel syndrome in both hands. “I’ve had carpal tunnel surgery twice, and the second time they sent a biopsy that tested positive for amyloidosis,” shared one member. “But my sensation is better, and I no longer have the awful burning pain and tingling.”

All of these AL amyloidosis symptoms are hard to catch on their own because they can be easily dismissed or explained by overlapping conditions and medications you might be taking.

How AL Amyloidosis Affects the Heart and Kidneys

AL amyloidosis most commonly affects the heart and kidneys. Each has its own set of symptoms, though some may overlap.

Heart Symptoms

Abnormal protein buildup in the heart is called cardiac amyloidosis. It causes a type of restrictive cardiomyopathy that thickens the heart’s walls and valves, making it hard for the heart to relax and fill with blood.

More than 75 percent of people with AL amyloidosis have some sort of cardiac involvement. Symptoms can include:

Complications over time may include:

Kidney Symptoms

More than 60 percent of people with AL amyloidosis experience kidney issues. As blood filters through the kidneys, abnormal proteins can get stuck. When this happens, the kidneys can’t work properly, causing protein to leak into the urine.

The result is a condition called nephrotic syndrome, which causes symptoms such as:

Over time, the kidneys may also struggle to filter waste from the blood. The result is kidney failure, which can cause further complications, including:

Other AL Amyloidosis Symptoms

AL amyloidosis also harms other organs and structures in the body. Symptoms can vary greatly depending on the affected area.

Nerve-Related Symptoms

Abnormal protein buildup can also affect how nerves work. Peripheral neuropathy, or nerve damage affecting areas outside the brain and spinal cord, affects about 35 percent of people as AL amyloidosis gets worse.

Symptoms may include:

About 20 percent of people may also have protein buildup that affects their autonomic nervous system, or the nerves that control vital body processes. This can have a wide and serious impact, affecting heart rate, breathing, and even sex.

Affected people may experience:

Digestive Symptoms

AL amyloidosis can also affect the digestive system. Hepatomegaly, or a swollen liver, may affect more than half of cases. About 7 percent also have issues with their digestive tract, or problems with their stomach and intestines.

These issues can affect how well you absorb nutrients and remove waste from your body. Related symptoms include:

For some MyAmyloidosisTeam members, digestive symptoms were unexpected. “I have lots of belching, acid reflux, constipation, and major diarrhea,” one member shared. “I didn’t know it was actually part of the condition.”

Skin, Tongue, and Soft Tissue Changes

As abnormal proteins build up in soft tissue and small blood vessels, people with AL amyloidosis may notice skin changes. These changes include:

Some people also experience macroglossia, or an enlarged tongue. This condition can affect speech, swallowing, and breathing.

Why AL Amyloidosis Is Hard To Diagnose

Some MyAmyloidosisTeam members have expressed frustration because they weren’t diagnosed for years. “My symptoms were so easily explained by other things,” one wrote. “For instance, I tire easily, so I was told to diet and exercise.”

Their experience is unfortunately common. AL amyloidosis is hard to diagnose because symptoms don’t always appear together or in a particular pattern. Many people see several specialists before getting answers.

Doctors may also diagnose kidney disease or heart failure without realizing AL amyloidosis is the cause. That’s partly because doctors look toward more common causes first, like diabetes.

As a result, diagnosis is often delayed. In some cases, it takes nearly two years. That delay also means life-saving treatment starts later.

When To Talk With a Doctor About Symptoms

If you think you may have AL amyloidosis, talk to your doctor about your symptoms. If you have multiple symptoms mentioned in this article, write them down and share your list at your next appointment.

Some symptoms are urgent. Call emergency health services if you’re having the following heart-related issues:

Your doctor can’t diagnose AL amyloidosis based on your symptoms alone. First, they may run blood and urine tests to check for signs of the condition and to detect blood disorders that may precede AL amyloidosis, such as multiple myeloma. Then, they may biopsy (test a sample of) an involved organ to look for abnormal proteins.

Not all doctors are familiar with rare diseases, so it’s OK to see multiple specialists or get second opinions if you still don’t have an answer. The Genetic and Rare Diseases Information Center recommends visiting university hospitals or centers where teams of specialists can work together on your case.