Patient Comments: Amyloidosis - Symptoms

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What symptoms did you experience with amyloidosis? Submit Your Comment

Comment from: Amyloidosis Warrior, 45-54 Female (Patient) Published: October 04

I was 49 when I was diagnosed with AL amyloidosis. Main concern was voice hoarseness. I had a scope and biopsy of my vocal folds. I was diagnosed with laryngeal amyloidosis in 3/2014. The disease spread to my trachea and into my bronchi of my lungs. I had 23 radiation treatments which stopped the progression of the disease. It did not eliminate the amyloidosis. I have since had chemotherapy and now have a tracheostomy due to narrowing of my trachea from the radiation.

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.

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.

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.

Comment from: shane, 55-64 Male (Caregiver) Published: March 15

My eye redness was caused by a scratch 2 days ago.

Comment from: jay, 45-54 Male (Patient) Published: August 24

I was diagnosed with cardiomyopathy infiltrative but amyloidosis is in bracket. Recently I am having black outs, for example, every other week. I need to know the cause of the black outs.

Comment from: gonnafightit, 45-54 Female (Patient) Published: March 04

I've recently been diagnosed with amyloidosis. It started with CHF (congestive heart failure) diagnosis. I am doing chemotherapy now, then a bone marrow transplant. Please find a good oncologist that is knowledgeable and positive and willing to help you fight for your life, they are out there.

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.

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.

Comment from: jlbnmich, 65-74 Male (Caregiver) Published: November 21

My husband was diagnosed with amyloidosis in one blood cell thru a bone marrow biopsy. We don't know what to do now. He keeps having blood work and they keep saying he has this from the number of proteins. He has no strength in his arms, a lot of pain in his back. He had carpal tunnel surgery for 1 of his wrists; they did a tissue biopsy then and said if it was negative for amyloids. He just feels very old (he is 70) because he can't do a lot of things. You would never know he is 70 to look at him. We are at a loss of what to do.

Comment from: velocity, 75 or over Male (Caregiver) Published: June 21

My spouse has familial amyloidosis, which has affected his heart. He was diagnosed in 2012. Prior to the diagnosis, he experienced shoulder pain which we thought was the result of a tetanus shot. He had hypertension since he was about 38 years old. But all in all he was robust and very athletic. In his 60's he started having leg , feet and ankle pain, but he was still the picture of health. At about 70, he seem to decline in health all of a sudden. He experienced rapid heart beats, pronounced skipping of beats while he was cutting the yard in 95 degree weather. We rushed him to the hospital where he was observed and discharged 8 hours later. NO stroke, no heart damage was seen. His health began to spiral down. He was later told that he heart failure. WE went through countless doctors before going to the Micheal Debakey Cardiac center before being diagnosed with amyloidosis. My spouse is fatigue, and has to rest frequently when walking. Besides his leg pain, his nausea,shortness of breath; he is getting by with his ICD. He was turned down for the liver, heart and kidney transplant because of his age and presence of numerous antibodies. WE are prayerful, waiting on the trials. My spouse does not know of other family members with this disease. His mother was 95 when she passed, mainly of diabetes and old age.

Comment from: rizza, 45-54 Female (Patient) Published: June 12

my doctor diagnosed my skin disease as amyloidosis and she wanted me to go on several biopsies but due to financial problems we haven't done it yet. I have read your information on amyloidosis and it is very informative and now i have more knowledge on how to handle it. Ten years ago, i was operated for multiple gallstones, they've taken 31 stones and found it very unusual. Now, i'm suffering fatigue, i have hypertension and some kidney problem. I have skin nodules from head to foot and it's getting worse as i get older. Thank you so much...

Comment from: [email protected], 75 or over Female Published: March 18

My father was diagnosed with the disease 14 years ago. He went to several different doctors and hospitals, who told him there was no hope. We almost gave up, but went to a hospital that performed a stem cell transplant using my father's own stem cells. It was a success! It was a long haul for my dad, but he was to lead a better life. He did have some kidney issues as a result of the disease, and after 14 years he had to go on dialysis, at age 80. I lost my dad 6 months ago. He was a true fighter and a hero in my eyes. But the stem cell transplant gave me a gift.

Comment from: joelle, 65-74 Male (Caregiver) Published: February 01

Probiotics are a relatively unknown cure for diarrhea. These replenish the intestinal tract with healthy flora and cause elimination or decrease of diarrhea. I've seen it work.

Comment from: sisters advocate, 55-64 Female (Caregiver) Published: November 02

My sister at age 64 has just been diagnosed with amyloidosis. She has been fighting and seeking medical attention for the last 5 years for chronic diarrhea, arthritis and high blood pressure. Also her feet and lower legs will turn purple when standing or setting for long periods of time. They never are the natural color. My other sister died at the age of 56 during a kidney transplant. Before her kidneys failed, they were treating her for lupus/arthritis which therefore killed her kidneys and then had to have a mitro valve transplant. I wonder if this is what she really had instead of lupus? Our whole family is having an issue with some of these systems and with very high cholesterol.

Comment from: xXBelieverXx, 13-18 Female (Patient) Published: July 12

Five months ago I went to the doctor and they noticed many abnormalities in my mouth. I thought nothing of it and she never told me the seriousness of what it could possibly be. Then last week I went to the dentist, they immediately referred me to another doctor and that doctor referred me to a health/science unit. My appointment is in three days. When I went to the doctors though he said it appeared to be amyloidosis, but he was not positive. I'm only 14 years old. I show almost every symptom of it, even random pain in my kidney and spleen, and sores on my hand and feet. I'm scared. My mom looked up amyloidosis like the doctor said and she just started crying and hugged me. She whispered in my ear, 'If this is what you have,' she wiped away tears, 'I will make sure you get the best care. I love you.' We both started crying together. Now we are awaiting for the biopsy, hopefully it is not what everyone suspects it is.

Comment from: Maxine, 45-54 Female (Patient) Published: May 02

My father died suffering from amyloidosis (AL) five years ago at age 76. His cousin died three years before that from AL at age 67. It is possible that other relatives also suffered the same condition. I am 51 and have noticed that my tongue seems to be enlarging. I regularly have ulcers from my tongue resting on my teeth.

Comment from: Laura, 45-54 Female (Patient) Published: February 20

I have been diagnosed with Amyloidosis by the Mayo clinic in MN. My symptoms began as shoulder pain, numbness with tingling, wrist pain and extreme pain in both feet. I am 53 years old and have good health until this time. I am taking Chemo, Dex, and have been scheduled to see if I am eligible for a Stem Cell transplant. This has just floored me. I am the mother of 8 children and 2 are teenagers still living in our home. I was misdiagnosed for 6 months until going to Mayo clinic. Hopefully I will be able to beat this illness. It's pretty scary.

Comment from: ROLAND CENT, 55-64 Male (Patient) Published: July 26

Hello, my symptoms are: constant cough, shortness of breath, no phlegm, right lung cavity filling up with fluid, absolutely no energy, weight loss no appetite, jaundice look, irritable and pale and very depressed, no incentive.

Comment from: ET PHONE HOME, 75 or over Male (Caregiver) Published: July 20

My husband was diagnosed with amyloidosis in December 2009. We went to Boston Medical Center last July; they ran some tests and he was diagnosed with Age-related amyloidosis. I was very happy with the treatment he received at BMC.

Comment from: Rosie, 45-54 Female (Caregiver) Published: May 27

My mother died at 74 from Amyloidosis. Her diagnosis took more than 18 months and by this time her bladder, liver and lungs have calcified. My two brothers have recently passed away from glioblastoma, grade 4. One was situated on the temple lobe, the other on the brain stem. The first brother was 50 when diagnosed and died within the year at 51, but did have a bulk reduction. The second brother was diagnosed (brain stem) and died within 3 months.

Comment from: Jim the Hammer, 55-64 Male (Patient) Published: April 12

I experienced itchy eyes which were unbearable, uncontrollable hemorrhoid hemorrhaging, and ankle swelling. After blood and urine tests resulting from high blood pressure it was determined that a kidney biopsy was required. Failing to diagnose it correctly I was treated with Prednisone for about a year then demanded to have another biopsy. In June 2002 they correctly diagnosed the disease and I had stem cell transplant in late December 2002. I feel that the trauma associated with chemo and the transplant was such that I may not agree to again even though it was successful. Today my life is quite normal.

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