Recognizing and Managing Neurological Symptoms of ATTR-CM

If you look up transthyretin amyloid cardiomyopathy (ATTR-CM), chances are pretty good that you’ll see it described as a heart condition. But it can impact other parts of your body, too, like your nervous system. And as neurologist David Polston, MD, explains, that can take a real toll on your daily life.

Dr. Polston shares advice for managing neurological symptoms of ATTR-CM.

Common neurological symptoms of ATTR-CM

If you have ATTR-CM, it means that clumps of an irregular protein called transthyretin amyloid (TTR) are being deposited in your heart. Many (but not all) people with the condition also have these amyloid deposits in certain nerves or connective tissues.

“Think of these deposits like putting sand in a machine,” Dr. Polston illustrates. “It gums up the system and interferes with how things normally function.”

TTR deposits (also called amyloid deposits) in your nerves cause symptoms in two main areas:

1. Your peripheral nerves
2. Your autonomic nervous system

Which symptoms you have — and how bad they are — usually depends on the type of ATTR-CM you have.

Peripheral nerve symptoms

Dr. Polston says people whose nerves are affected by TTR amyloidosis tend to notice issues in their peripheral nerves first. Those are the nerves outside your brain that carry signals to your hands, feet and other parts of your body. They tend to be smaller and more vulnerable to damage. Peripheral nerve symptoms include:

• Numbness, tingling or burning sensations in your feet or hands
• Difficulty feeling touch, temperature or even pain
• Feeling like your arms and legs are swollen or “thicker” than usual
• Trouble feeling where your feet are in space, which can affect your balance and walking

Amyloid can also compress the nerves in your spine or wrists. Compression causes pain, numbness and weakness that can radiate through your limbs and make it harder to move.

There are two types of ATTR-CM, and which type you have can dictate how severe your symptoms are.

1. Wild‑type ATTR‑CM: Peripheral nerve involvement (if you have it at all) is generally mild.
2. Hereditary ATTR-CM: Peripheral nerve symptoms tend to be more pronounced. They may even be disabling.

Autonomic nervous system symptoms

ATTR-CM can also impact your autonomic nervous system. These are the nerves that regulate automatic behaviors, like digesting food or maintaining your body temperature.

When amyloid deposits affect your autonomic nerves, Dr. Polston says that it can cause:

• Lightheadedness or dizziness, particularly when standing
• Unusual sweating
• Sudden drops in blood pressure (orthostatic hypotension)
• Digestive issues, like slow stomach emptying (gastroparesis), diarrhea and constipation
• Problems peeing, like needing to go suddenly, leaking and not being able to fully empty your bladder
• Sexual dysfunction

These symptoms can be subtle and get worse over time. You may have written them off in the past as signs of aging or another chronic health condition. But an ATTR-CM diagnosis can sometimes be the lightbulb moment that makes sense of longstanding issues.

“It’s usually much clearer in hindsight,” Dr. Polston notes. “Once you recognize the cause, the more you see the symptoms for what they are.”

Living with neurological symptoms of ATTR-CM

Managing neurological symptoms of ATTR-CM usually requires a team of experts, a trial-and-error approach and a hefty dose of patience. Here’s what you need to know.

Building a care team

Because ATTR-CM affects multiple body systems and causes a range of symptoms, it’s common for a team of specialists to collaborate on care.

“By and large, it’s cardiology and neurology working together,” Dr. Polston says. “Then, we tailor additional support based on what’s affecting your day‑to‑day life.”

Beyond your cardiologist and neurologist, you may also work with:

• Orthopaedic specialists: They’re your go-to for carpal tunnel syndrome — a common nerve compression problem for people with ATTR-CM. They may also help manage joint and spine problems, like arthritis, that make pain and mobility issues worse.
• Physical and occupational therapists: Different PT specialists target different symptoms. For example, you may see a neurologic physical therapist for help with balance and walking and a cardiopulmonary physical therapist to address fatigue.
• Mental health providers: A new diagnosis can trigger or worsen stress, anxiety and depression — all of which can make physical symptoms flare.

Depending on the type of ATTR-CM you have and the complications it causes, you may also work with other specialists, like hematologists or nephrologists.

Treatment options

There’s no cure for ATTR-CM. But there are treatments that can help slow down the nerve damage that’s causing your symptoms. Your providers may also prescribe medications or recommend therapies that reduce the impact of specific symptoms.

Lifestyle changes

Adopting these habits can help you navigate daily life with peripheral nerve complications of ATTR-CM.

• Use assistive devices. Braces and orthotics can help manage pain and improve your mobility. Rollator walkers are great if fatigue creeps up on you. And shower benches and raised toilet seats reduce your risk of falling in the bathroom.
• Avoid going barefoot. If you have numbness in your feet, you could hurt yourself without knowing it. Wear shoes and check your feet regularly for cuts, blisters and other injuries.
• Wear supportive shoes. Work with a physical therapist or podiatrist to find shoes that protect against injury and provide better stability.
• Prioritize lighting and clear walkways. A well-lit, uncluttered home can make it easier to move around safely. And an occupational therapist can help you figure out where and how to adjust.

Lifestyle adjustments can have just as big an impact if you’re living with autonomic side effects of ATTR-CM. Dr. Polston says it helps to:

• Change positions slowly. This reduces the chance of your blood pressure dropping unexpectedly.
• Review your diet. If you have gastrointestinal or blood pressure issues because of ATTR-CM, talk to a dietitian. Small changes can sometimes make a big difference in symptom severity.
• Wear compression garments. If you get dizzy when you stand up, it’s because your blood is pooling in your legs. Medical-grade compression clothes and abdominal binders can help.
• Adjust your exercise routine. Working with a neurologic physical therapist can help you create a low-risk, high-reward fitness routine tailored to your needs.

Home modifications

If ATTR-CM affects your balance or gait, it can help to make changes to your living space. The right modifications can make your home safer — and make daily life a little easier.

“You might not need to make changes today.” Dr. Polston notes. “But it will be easier on you if you plan ahead.”

In the short term, that may mean making small accessibility tweaks, like removing rugs or adding handrails and grab bars. Long term, it could mean moving to a one-story home, doing some large-scale remodeling or considering a living situation that offers more support.

When to call your provider

Dr. Polston urges you to contact your neurologist if you have ATTR-CM and notice that:

• Your neck pain is getting progressively worse.
• You have shooting pains running from your neck into your arms or down your back.
• It’s suddenly become harder to maintain your balance.
• Walking has become difficult.
• You’re falling and can’t explain why.

“These can be warning signs of concerning problems such as spinal cord compression,” he emphasizes, “and they deserve prompt attention.”

Final thoughts

“ATTR-CM is challenging, but it’s not as mysterious as sometimes it might seem,” Dr. Polston reassures.

It’s only a mystery if you try to deal with it alone.

Instead, lean on your loved ones — and turn to trusted healthcare professionals for answers to the questions keeping you up at night.

“There are people available to talk to you about ATTR-CM, to work through it with you,” Dr. Polston emphasizes. “We can help you understand and cope with what’s happening in your body. And that knowledge isn’t just power. It’s also comfort.”