Patient Comments: Amyloidosis - Symptoms

What symptoms did you experience with amyloidosis?

Comment from: oldkarl, 75 or over Male (Patient) Published: March 01

I have made a list of the symptoms/markers of my amyloidosis. I read the literature, and any which are mentioned, and I have or have had at some point, I add them to the list. My list is now at Number 44, and counting. It seems the easiest to notice are heart failure, frothy urine, pain in the chest near the nipples, shortness of breath, and physical confusion. I give this list to my MD, and it really seems to help. Some of them apart from those mentioned above are protein in kidney and urine, enlargement of liver, pancreas, thyroid, parathyroid, kidney, lung, heart, and tongue, lung nodules, esophagus pain and GERD, atrial fibrillation, tachycardia, neuropathy and weakness in limbs, anemia and fatigue, diverticulosis and clay-colored stools, Sjogren's syndrome, ankylosing spondylitis and rheumatoid arthritis. In 2014 I experienced severe pulmonary problems, altered consciousness, and chronic cardiac and kidney failure. I have heard heart artery and capillary plugs, coronary bypass and stents prior to that.

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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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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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