Hi, my mum has amyloidosis she had been to the hemo-oncologist which were helpful and caring but she also had to go up to London to see the Amyloidosis team for England, found a lot more answers there. I've been told by my mum that it is a lot more difficult to diagnose Amyloidosis on the stomach and heart. Sorry if this isn't helpful.
Just hang in there girl.
How are you? Amyloidosis develops when amyloid proteins build up in organs or tissue, including the heart, liver, kidneys, spleen, gastrointestinal tract and nervous system. It refers to the variety of conditions that can result from abnormal amyloid protein deposits. The severity of amyloidosis depends on the organs affected. And the only definitive test is a tissue biopsy. This may involve several samples especially if your doctor suspects that you have systemic amyloidosis. The type usually depends on your symptoms and medical history. Primary amyloidosis is the most common form and is usually not associated with other diseases. Secondary amyloidosis occurs with chronic inflammatory or infectious diseases and hereditary or familial amyloidosis is the only inherited form of the disease. We will know the type after the results of the genetic testing and the other tests. Take care and do keep us posted.
I have had amyloidosis since 9/08. Web search Amyloidosis Support Groups
and join the group-there are over 500 members who can help you-they don't ask for money either.
How are you? What were the results of the genetic test and liver biopsy? Were you able to determine the type of amyloidosis? Hang in there and hope to hear from you soon. Joining support groups as suggested by hypoman may indeed help and support you along the way. Take care and do keep us posted.