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Health condition

Amyloid neuropathy

Amyloid neuropathy - from hereditary ATTR or AL amyloidosis - causes progressive painful numbness with prominent autonomic symptoms, and now has effective treatments when caught early.

Key points

What matters most, at a glance.

The essentials in plain English - symptoms, when to seek help, who to see and what treatment looks like.

  • Painful numbness starting in the feet, plus autonomic features: dizziness on standing, gut disturbance, erectile dysfunction, sweating change

  • Carpal tunnel syndrome in both hands often precedes the neuropathy by years

  • Unintentional weight loss with a progressing neuropathy should always raise the question of amyloidosis

  • Causes: hereditary transthyretin (ATTR) variants or light-chain (AL) amyloidosis - the treatments differ completely

  • Gene silencers and stabilisers have transformed hereditary ATTR neuropathy; early diagnosis preserves nerve function

  • The heart is assessed in every case, as amyloid frequently involves both

Understanding it

About Amyloid neuropathy, and what to do next.

Amyloid neuropathy is a small-fibre-predominant, relentlessly progressive neuropathy: burning feet, then numbness ascending, loss of pain and temperature sense, and an autonomic system failing in parallel - postural light-headedness, alternating bowels, early satiety, sexual dysfunction. Red flags that separate it from garden-variety neuropathy include rapid progression, weight loss, bilateral carpal tunnel history, a family history of neuropathy or heart failure, and any known paraprotein.

Establishing the type is everything. Hereditary ATTR amyloidosis is confirmed by TTR gene testing and now has licensed gene-silencing therapies (patisiran, vutrisiran and inotersen-class drugs) and stabilisers that slow or halt progression - outcomes unimaginable a decade ago. AL amyloidosis, driven by a plasma cell clone, is treated haematologically, and speed matters even more. Both need cardiac assessment. The UK National Amyloidosis Centre provides definitive typing and coordinates care; a neurologist who suspects amyloid can refer directly. If your neuropathy is progressing quickly and remains unexplained, asking specifically whether amyloidosis has been considered is a well-founded question.

A quiet reminder

This guide is for information, not medical advice.

Your GP knows your history and can tell you which parts apply to you. If in doubt, see them.

Frequently asked

Common questions about Amyloid neuropathy.

Quick, plain-English answers to what people ask us most.

  • What is amyloid neuropathy?

    Amyloid neuropathy is nerve damage caused by the build-up of abnormal amyloid proteins around and within nerve fibres, leading to progressive numbness, tingling, weakness, and sometimes autonomic nervous system problems.

  • What causes amyloid neuropathy?

    It can result from various forms of amyloidosis, including AL amyloidosis and hereditary ATTR amyloidosis, where abnormal proteins accumulate in and around peripheral nerves, disrupting their normal function.

  • What are the symptoms of amyloid neuropathy?

    Symptoms include numbness and tingling, often starting in the feet and progressing upward, muscle weakness, and autonomic symptoms such as dizziness on standing, digestive problems, or erectile dysfunction.

  • Is amyloid neuropathy dangerous?

    Yes, it is a progressive condition that can cause significant disability over time, and when linked to certain hereditary forms, can also involve serious heart and other organ complications.

  • Is amyloid neuropathy genetic?

    It depends on the underlying cause; hereditary ATTR amyloidosis is genetic and can run in families, while AL amyloidosis arises from an acquired plasma cell disorder rather than being inherited.

  • Can amyloid neuropathy be treated?

    Yes, treatments targeting the underlying amyloidosis type, including newer specific medications for hereditary ATTR amyloidosis and chemotherapy-based treatment for AL amyloidosis, can help slow or stabilise progression.

  • How is amyloid neuropathy treated?

    Treatment depends on the underlying cause and may include disease-specific medications (such as TTR stabilisers or gene-silencing drugs for hereditary forms), chemotherapy for AL amyloidosis, and supportive care for nerve symptoms.

  • How is amyloid neuropathy diagnosed?

    Diagnosis typically involves nerve conduction studies, blood and genetic testing to identify the type of amyloidosis, and sometimes a nerve or other tissue biopsy to confirm amyloid deposits.

  • Amyloid neuropathy vs diabetic neuropathy — what's the difference?

    Diabetic neuropathy results from long-term high blood sugar damaging nerves and is far more common, while amyloid neuropathy results from a specific abnormal protein deposition process, often with additional organ involvement and requiring specific testing to confirm and guide targeted treatment.

  • When should I see a doctor about possible amyloid neuropathy, and how quickly can I be seen privately?

    See a doctor for unexplained progressive numbness, tingling, or weakness, particularly with autonomic symptoms or a relevant family history. NHS neurology referral can take several weeks, while private specialist assessment is often available within about two weeks.