Patient Comments: Amyloidosis - Symptoms

What symptoms did you experience with amyloidosis?

Comment from: mimi, 75 or over Male (Caregiver) Published: November 14

My dad was recently diagnosed with amyloidosis. For the past year or two he has had shoulder pain, leg/knee pain, fatigue, and spells of sweating, dizziness, rapid heartbeat. He was diagnosed with carpal tunnel a few years ago in both hands. He had surgery in one and has no more pain, but he still has numbness in his fingers. He was a farmer so he has always been very active. He gives out quickly now and is short of breath a lot. He still enjoys gardening and keeps a chair nearby so he can rest when he begins to feel weak and short of breath. He has been placed on a no- salt, low fat diet and was told to exercise. He is not on any medication for this other than aspirin. The doctors say there isn't anything that can be done for him. Interestingly, his brother died from multiple myeloma four years ago.

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Comment from: r.jr, 75 or over Male (Caregiver) Published: August 01

My father had been going to the Cleveland Clinic for CHF; he had an aortic valve replaced in 1996 and a pacemaker/defibrillator installed in around 2006, but continued to decline health wise. In 2009 he had a stroke which he seemed to recover from fairly well. He wasn't the same but he functioned and even still drove. He was seeing his cardiologist every 6 months for blood work, ECG, pacemaker, and echocardiograms. His cardiologist noticed a thickening of his heart valves and referred him to another cardiologist who diagnosed him with amyloidosis (I believe he said senile systemic). He took him off of all meds except for Coumadin, baby aspirin, and water pills. My father had been suffering with hand pain and numbness, shortness of breath with extreme fatigue, frequent falling when walking, and loss of appetite. Nothing tasted good to him, especially meats. It finally came to a point when he could not get up or dressed without help as his hands would no longer work and he had no energy. He was diagnosed as anemic and put on iron pills. At some point he bumped his toe on the closet door and developed an infection which turned out to be osteomyelitis for which he was hospitalized and the infected bone had to be removed from his foot. On being placed in a rehab facility for his foot he steadily became worse. After 2 weeks in rehab his foot surgeon removed the stitches and said everything looked fine and he could go home on the weekend. This was on a Monday, the next day he became very ill, stopped eating, and seemed to just start shutting down. The rehab people wanted him to be sent to the hospital but he just wanted to go home. We took him home on Wednesday in an unresponsive state. He could hear us, but was not able to respond other than to get agitated in his manner; he died at home (at 82 years old) as we hope he would have wanted. I am convinced that it was the amyloidosis that finally took him but every doctor or nurse that I mentioned amyloidosis to while in the hospital would not acknowledge it. They would only say that, “We have all his records and he just needs rehab.” The cause of death listed on the death certificate was CHF. I know he put on a front for a long time saying he was not in pain but he really was. I can only hope that amyloidosis can be better understood or even acknowledged by the medical profession and also the public as this is an affliction that even doctors and nurses know next to nothing about let alone the average lay person.

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Comment from: kryptochic, 35-44 Female (Patient) Published: March 08

My uncle (my mom's brother) was recently diagnosed with amyloidosis at age 68. I saw him a year ago and he was having trouble walking and at one point fell outside our house, cut his leg on something which caused a massive gash. At that time we did not know what was wrong with him only that he was experiencing multiple symptoms but could not get any kind of affirmative diagnosis. My mother, now age 60 saw a neurologist yesterday and was told that due to the symptoms she experiences (weakness in hands and arms, severe abdominal pain other intestinal problems, weakness in legs, blood pressure dropping after standing up, and even a few more) that it is extremely likely that she has the disease as well. She is being tested for it in 2 more days. And now there is myself. I am 36 and have all of the symptoms my mother has. If she is diagnosed with the disease I, along with my 2 siblings will need to be tested as well. I am almost convinced I have it even at my age. I'm very afraid to be honest. I'm a single mother of an 11 year old girl whose father is uninvolved. This would leave her practically an orphan if I were to pass away soon. That is my greatest fear.

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Comment from: Daughter-in-law, 45-54 Male (Caregiver) Published: January 26

My father in law was diagnosed with amyloidosis in 2011. His first symptoms were fatigue, anxiety, depression like symptoms, and pain in his hands and legs. It moved on quickly to overall weakness and he began falling. He had severe digestive disruption which caused him to lose 50 pounds in a few months. They did carpel tunnel surgery, removed his gallbladder, and did many tests with several doctors without successful diagnosis. The neurologist that he saw basically said that the symptoms were due to severe anxiety and depression. Finally he went to the Mayo Clinic and they diagnosed him within 2 weeks. He died exactly 1 week after diagnosis, just 2 months past his 50th birthday. From the time he began seeing doctors about his "vague" symptoms until he passed away was only about 8 months.

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Amyloidosis - Other Illnesses Question: Please describe any other illnesses you have suffered in addition to amyloidosis.
Amyloidosis - Treatment Question: What treatment has been effective for your amyloidosis?
Amyloidosis - Complications Question: Describe the complications of amyloidosis experienced by you or someone you know.

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