Amyloidosis Support Group

Primary amyloidosis occurs when the body's antibody-producing cells do not function properly and produce abnormal protein fibers made of antibody fragments. Some people with primary amyloidosis have a condition called multiple myeloma. The antibody fragments come together to form amyloid deposits in different organs, including the kidneys, where they cause serious damage.

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  • boomshari

    I'm new.

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    Please help me I am so sick of being called a drug addict. I have MS, Fibro,Hypotention,Hypertention,seizures. More I get Narco I take 2 at night because it feels like glass on me when I ry to lay down.My MS is painfull and the only Dr. who knows is my primary of 35 yrs.I cry alot and have lost my daughter and grandchildren over this.She says I am a drug and Dr.jumper. I'm grouchy but I hurt and...
  • deleted_user

    Lichen amyloidosis

    I have lichen amyloidosis. This started off as itching all over my body when I was 11 years old. The constant itching lead to this condition which is thickening of the skin and also hyper pigmentation (too much pigment - darker skin). I am a female of 43 years old and the condition was not treated as I did not apply the steroids when I was younger. I have over the past 20 years wanted to wear...
  • deleted_user

    Lichen Amyloidosis

    I was diagnosed with this skin condition several years ago, and have never gotten effective treatment. The itching seems to be getting worse as I age. I'm 47, and I've had this since my teens! The condition is limited to my lower legs, but it's unsightly, embarrassing and uncomfortable. I'd appreciate any help. I'm planning on seeing a dermatologist next week to see if something like...
  • CrazyCanuk

    my husband is an alcoholic help

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    I need your help to understand my husband's alcoholism please. He has not been officially diagnosed as an alcoholic, but I feel sure he is. He binge drinks and have to drink every drop the house which usually is about 3 days. He sometimes misses work, but since he works at home he logs in and apparently no one is aware he is actually watching movies and getting drunk. He gets really...
  • deleted_user

    Internet pharmaceutical companies

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    Does anyone have a reference to a quality internet pharmaceutical company? My insurance will no longer cover Revlimid, 10 mg tab. I need to fine the equivalent, Lenalidomide.
  • My journey began back in September, when I began running low grade fevers and dropped 12 pounds seemingly overnight. I weighed 128 prior to the weight loss. Then I started itching in November. HORRIBLE itching - like claw my skin off itching, which was worse at night. Was tested for thyroid issues, autoimmune disorders, leukemia, and lymphoma. Also had colonoscopy, endoscopy, and CT scan. ...
  • deleted_user

    Hereditary?

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    My Grandma died from amyloidosis. The doctors told my parents that it was hereditary. What does that mean for my sister and I? Does anyone know?
  • deleted_user

    Uncle has Familial Amyloidosis

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    I hope you don't all mind that I am here. I have no idea if I have Amyloidosis or not, though my uncle was just diagnosed. They found nothing in his liver or bone marrow, but only his heart. His symptoms were cardiac in nature and his legs swelled up so he is now on Lasix. He is 66 years old and has always taken care of his health. We do not know of anyone else in our family who has had this,...
  • deleted_user

    Endocarditis with Amyloid Patient

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    My father was diagnosed with Cardiac/Senile Amyloidosis Jan 2011. He was living a normal life until Dec. and since then has made a steep decline. He has suffered renal failure, had his bladder and prostate removed, his heart shocked out of Afib and a fistula that is not quite ready in his arm for dialysis. Just this week he became delusional and lost hearing somewhat and was p ut back in the...
  • deleted_user

    Secondary Amyloidosis

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    My husband has just been diagnosed with AA Amyloidosis. He is an otherwise vibrant 46 year old, and we have two young children (13 and 9). After seeking the "best" doctors at both Mayo in Rochester, MN and Boston Medical Center, physicians at both centers were unable to come up with the root cause, which is what is necessary to treat this disease and slow the progression.We are now flying to...
  • deleted_user

    Amyloid in my Bladder

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    I have Amyloid in my bladder and i have had it for three years and it has a tendency to bleed the last time i bled was in November and i lost about half of my blood. Although i have had extensive examinations, i have been to the London Free Hospital twice, i have been given no reason why i have this Amyloid and because i have been told that although i have regular cystoscopies, i could still...
  • deleted_user

    New to Kidney problems

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    I read some of the posts and this is new to me.This is secondary to my primary disease also and I have several things going on.I have infection, blood and protien in my urine. A lot of pain...Plus, my e-GFR readins are dropping, as I am at 42 and do not know if that is very low or not.Can someone help me? I normally do not have fear and understand my health issues, but this is so new and I am...
  • deleted_user

    Amyloidosis and Multiple Myeloma

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    My grandfather was diagnosed with Multiple Myeloma and Amyloidosis recently. His doctor told the family that we should think about anyone else in the extended family that might have died of Amyloidosis while misdiagnosed. It's supposed to be a one in a million rare disease but often it is overlooked and therefore not tested. We are not remembering symptoms that some of our departed relatives...
  • zzztop

    ATRIAL SEPTUM DEFECT HOLE IN HEART

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    WHEN I WAS BORN I HAD A HOLE IN MY HEART I NEVER KNEW IT TILL LAST YEAR WHEN I HAD ALL THESE HEART PALPATONS IT IS CALLED ATRIAL SEPTAL ANEURYSM. BUT THE HOLE HEALED. THEN IT IS CALLED ATRIAL SEPTAL DEFECT. THIS DR. I WENT TO NEVER TOLD ME THIS FOR 2 YEARS, AND THEN HE TOLD ME I FREAKED OUT I HAVE ANTISISPTORY ANXIETY. AND THIS IDIOT NEVER TOLD ME . I HAVE HAD HEART PALPATIONS FOR YEARS...
  • deleted_user

    good luck

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    My mom passed away from this disease in May of this year. We live in a rural area and it took the doctors a full year to figure out what was wrong with her. During that time the amyloid did all kind of damage building up in her organs. I cant tell you of the times doctors accused her of imagining her symptoms and sent her home. This disease from what I have learned is seldomly tested for and I...