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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Kidneys & Bladder
/ Amyloidosis Support Group

Amyloidosis and Multiple Myeloma

deleted_user
deleted_user
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 had that fit. We are told to get our family physicians to mail a vile of blood to an address to be tested for genetic markers.
Is anyone else going through this?
deleted_user
deleted_user
I do hope your Grandfather is improving.
Want to let you know the ASG (Amyloidosis Support Group) is a national organization that holds meetings in over 20 major cities in the US. The website is: www.amyloidosissupport.com. There you will find a list of locations and dates for meetings. Patients, and family members are welcome. It is an informational and supportive group with guest speakers from centers of excellence that are experts in amyloidosis.
MaryAnn
deleted_user
deleted_user
I do hope your Grandfather is improving.
Want to let you know the ASG (Amyloidosis Support Group) is a national organization that holds meetings in over 20 major cities in the US. The website is: www.amyloidosissupport.com. There you will find a list of locations and dates for meetings. Patients, and family members are welcome. It is an informational and supportive group with guest speakers from centers of excellence that are experts in amyloidosis.
MaryAnn
deleted_user
deleted_user
I am sorry to budge into this board. I am usually on the Chronic Pain Board threads. This was interesting to me because I went undiagnosed for several years with chronic pain & illness. My labs always showed inflammation. I was suffering from chronic infections, & painful hands & feet. Finally I was able to get into the Mayo clinic after seeing 5 or 6 specialists in the Chicagoland area. I met with my Neurologist there & the final test he suggested I have done while at Mayo had to do with Amyloidosis. I then went to the oncology department of Mayo where the technician used a thick needle to suck fatty tissue out of my abdomen. He did it quickly & several times. I cannot believe I did not cry...I felt no pain. It was like getting lypo without any drugs. It was over in 5 seconds...just shocking. I had to wait a few weeks for the results. That was the hardest part. I had never heard of this disease before this past year. I did get my diagnosis of autonomic small fiber neuropathy & peripheral neuropathy...cause still unknown:( I am praying for everyone & anyone who wants my prayers from this Amyloidosis Support Group. Waiting for my results felt like a lifetime for me. I just want to put people at ease...I offer prayers. God Bless.
-Jennifer
nik2
nik2
Hi Steambugg, I also hope your grandfather is improving. I'm from SC and was tested about 2 wks ago for this disease. I have 2 first cousins and an aunt that has died from this disease, because you one in my area knew a lot about it. My test was taken and sent to NY, so have have to wait until june 21,before I have my report back.
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