Amyloidosis CS Iceberg

Most Common Symptoms Among Members

Heart issues

Fatigue

Pain

Neuropathy

Fluid

Swelling

Shortness of breath

Liver problems

Stomach issues

Less Common Symptoms Among Members

Weakness

Kidney issues

Dizziness and vertigo

Balance

Weight loss

Depression or anxiety

Skin problems

Carpal tunnelsyndrome

Weakness

10 percent discuss feeling weak. “During the day, when I’m walking, my legs feel like cement.” “Went from being strong and active for my age to being tired and weak. Lost virtually all muscle mass.”

Kidney issues

19 percent talk about problems with their kidneys, including kidney disease. “I have stage 3 kidney disease.” “I had a kidney biopsy, which led to the discovery of amyloidosis.” “It wrecked my kidneys.”

Carpal tunnel syndrome

3 percent talk about carpal tunnel syndrome. “My bilateral carpal tunnel syndrome has caused me to be in pain all day for the past couple of weeks.”

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Neuropathy

29 percent talk about neuropathy, numbness, or tingling sensations. “Over a few months, the neuropathy that started in my feet had reached my thighs, and I began having issues with my hands and face as well.”

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Fatigue

29 percent talk about fatigue and exhaustion. “The utter exhaustion at times is overwhelming!”

Stomach issues

20 percent talk about issues with the stomach, including nausea, diarrhea, and constipation. “My most surprising symptom of amyloidosis is alternate bouts of diarrhea and constipation.”

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Dizziness and vertigo

10 percent talk about experiencing dizziness or vertigo. “His lack of balance and dizziness really took away his independence and resulted in numerous falls.”

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Liver problems

10 percent talk about liver involvement with amyloidosis. “My liver enzymes are very elevated.” “I have hATTR. It has affected my kidneys, liver, bladder, and eyes.”

Shortness of breath

22 percent talk about feeling short of breath. “I was having a problem catching my breath, extremely tired and could barely take a few steps.” ​​“I get shortness of breath going up and down stairs.”

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Heart issues

78 percent talk about symptoms involving the heart, such as cardiomyopathy or arrhythmia. “My ATTRwt has damaged my heart.” “I have rapid heart palpitations.”

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Skin problems

9 percent talk about skin problems, which include small bruises on the skin (petechiae) and deposits under the skin. “I started having brown, purplish patches on my forehead extending sideways to my eyes and neck.”

Fluid

15 percent talk about a buildup of fluid or effusion. “He is having great difficulty breathing and has had fluid removed from his lungs twice in the past month.”

Swelling

12 percent talk about swelling or edema. “I was diagnosed after months of pain and swelling in my legs.” “I had experienced swollen feet and had to go for physical therapy for months to massage the swelling out.”

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Depression or anxiety

12 percent experience depression or anxiety. “The bad days are when depression really hits me.” “I speak to my therapist and psychiatrist about my anxiety and depression. It helps me to cope better.”

Balance

13 percent talk about trouble with their balance. “I try to stay active, but my balance is not good.” “I’ve been trying to walk, but I don’t want to go too far by myself because balance is still an issue for me.”

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Weight loss

9 percent talk about weight concerns, primarily weight loss. “I have lost over 50 pounds. I have no appetite most of the time.”

Pain

37 percent talk about pain. It can occur in multiple areas, such as the hands and feet, joints, and muscles. “I woke up this morning and knew that it was going to be one of those days where the pain rules the day.”