Patient Comments: Amyloidosis - Symptoms

What symptoms did you experience with amyloidosis?

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

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

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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: 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.

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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.

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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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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.

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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.

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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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