Patient Comments: Amyloidosis - Symptoms

What symptoms did you experience with amyloidosis?

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: 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: 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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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...

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Comment from: hollyvan60@aol.com, 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.

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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.

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Patient Comments

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Amyloidosis - Other Illnesses Question: Please describe any other illnesses you have suffered in addition to amyloidosis.
Amyloidosis - Treatment Question: What kinds of treatment, including chemotherapy, have you received for amyloidosis?
Amyloidosis - Complications Question: Describe the complications of amyloidosis experienced by you or someone you know.

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