Hi, I am so glad you are going to England. I just lost my mom to Multiple Myeloma with secondary Amyloidosis. I had researched every where as we had never even heard of the disease. My dad was ready to fly her to Boston for possible treatment. Unfortunately, she was already to ill to fly. PLEASE do not take NO for an answer. Keep fighting. This disease can be maintained with the proper treatment. I will pray for your husband and your family. Please keep fighing until you find the correct treatment. God Bless.

I wish your husband the best and will be praying for him. About 3 months ago, I was diagnosed with amyloidosis and am scared to death. As of last week the MD's told me that they think it is in the skin only, but now my tongue is very sore and anything acidic burns it. Like your situation, I also have small children and am otherwise very healthy. I work in the medical field and we treated one patient with this disease about 5 years ago. When my doctor gave me this diagnosis, I knew that I had heard the word before, but it had been years before and I had to go back and ask the nurses that treated him about it. (The MD giving me the diagnosis, said that he has never seen a case of amyloidosis.) The patient we treated with systemic amyloidosis was in his late 70's and he battled the disease for about 3 years. He was in pretty good health until the last 6 months. He even went on a trip to Alaska and killed a bear. The patient did not have any amyloid deposits on his skin. He was treated by an oncologist and a primary care MD only. I hope that the physicians in England can help. Please don't give up and let us know how it is going.

I was just diagnosed with secondary amyloidosis, which caused them to finally realize I wasn't kidding about being ill. My root cause is sarcoidosis. There are alot of diseases, as I understand it , that can cause amyloidosis, like multiple myeloma and different inflammatory diseases. As in my case, the root cause isn't nearly as serious as the amyloidosis. Have you tried going to M.D. Anderson Cancer Center? There is my doctor there, who is a specialist in amyloidosis, Dr. Micheal Wang.

The common treatment for primary amyloidosis is chemotherapy. Even though I have secondary, they are seeking to kick it's butt, so so speak, and therefore are giving me chemotherapy for six months to see if we can get the amyloidosis to step down. It can slow the progression while you are looking for the underlying cause. If I were you, I'd learn more about autoimmune diseases, since they are among the most common inflammatory diseases out there. There aren't many, and most of them are very manageable. Let me know what England says, I will be keeping you all in my thoughts.

The SAP scanner that they have in the UK, according to what I have read can tell the amount and distribution of amyloid in the body, but it cannot tell the type. And the type, AA, you have already been told.

As for what causes AA amyloidosis, it is supposed to be from infections such as tuberculosis, leprosy, bronchiectasis, chronic osteomyelitis, and chronic pyelonephritis, or inflammations such as rheumatoid, reactive ,or psoriatic arthritis; inflammatory bowel disease; or Behcet syndrome (not usual in the U.S.). It can be associated with lupus, polymyositis, and polymyalgia rheumatica., and even gout, pseudogout, and noninflammatory sarcoidosis. I've read it can also be associated with ankylosing spondylitis (causes inflammation and spontaneous fusion of vertebrae to adjacent vertebrae) which is in turn associated with the HLA B-27 haplotype - an inherited protein on the surface of white blood cells.

If your husband has been having any back or neck problems suggestive of ankylosing spondylitis, your doctor might consider checking his blood for the HLA B-27 antigen.

The AA type can also go along with certain cancers such as Hodgkins disease and renal (kidney) cell carcinoma. And it can go along with FMF and other fever syndromes. It can also go along with Castleman's Disease. It can even go along with subcutaneous drug abuse (past usage included).

I would suggest making a list of these things at take it to a good internal medicine specialist and ask him to work to rule out or confirm each. So many possibilities makes it a tough nut to crack. I hope you find out which thing it is!

What symptoms were your husband having before he was diagnose?