Patient Comments: Amyloidosis - Symptoms

What symptoms did you experience with amyloidosis?

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:, 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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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.

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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.

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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.

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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.

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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 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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