Patient Comments: Amyloidosis - Symptoms

What symptoms did you experience with amyloidosis?

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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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.

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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.

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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.

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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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