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.

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.

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.

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.

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.

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.

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.