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Table 1 Symptoms reported by organ system

From: Patient and family experience with transthyretin amyloid cardiomyopathy (ATTR-CM) and polyneuropathy (ATTR-PN) amyloidosis: results of two focus groups

Symptoms reported by organ system

ATTR-CM

ATTR-PN

Cardiac

  

Arrhythmia

Atrial Fibrillation

 

Enlarged heart

 

Fluid retention/Swelling

 

“Hearing” own heartbeat

 

Increased fatigue with altitude

 

Intolerance to activity

 

Orthostatic hypotension

 

Passing out/Fainting

 

Shortness of breath

 

Gastro-intestinal

  

Abdominal pain

 

Bloating

 

Bowel problems

 

Changes in taste of food/loss of taste in food

 

Constipation

Diarrhea (chronic)

 

Feeling full quickly

 

Loss of appetite

 

Low esophageal motility/ "slow digestion"

 

Pasty feeling in mouth

 

Upset stomach

 

Vomiting

 

Weight loss

Integumentary

  

Night sweats

 

Rash

 

Musculoskeletal

  

Back pain

 

Balance when walking

 

Bi lateral carpal tunnel

 

Clumsiness/dropping tools

 

Contraction of fingers

 

Heaviness in legs

 

Inability to exercise

 

Loss of muscle mass

 

Loss of muscle tone

Loss of stability

 

Muscle twitching, cramps and spasms

Weakness

 

Weakness/knees buckling

 

Neurological

  

Burning sensation in feet and hands

 

Cold skin, hands, feet

 

Decreased sensitivity

 

Dizziness

Dry eyes

 

Erectile dysfunction

Fatigue

General malaise

Hearing loss

 

Heat intolerance

 

Increased sweating

 

Lower back pain

 

Memory loss

 

No sensation with full bladder

 

Numbness in hands

 

Pain in feet

 

Pins and needles

 

Reduced sexual drive

 

Sensitive to touch/unusual burning

Urinary incontinence (nocturia)

 

Urinary retention

 

Vision impairment

Psychiatric

  

Depression

Mood changes

Sleep disorders/Insomnia