I am new to communicating via a forum. Am I on the right track?
Roy
You are communicating, fine, Roy. I'm sorry no one has checked in to respond. Things can be pretty slow on the communities during the holiday season. Have you gotten your biopsy?
Hi Aloharoy,
Amyloidosis is a tough one to get diagnosed since so many doctors never even think of it. My doctors did a bone marrow biopsy in which they found plasma cells and then they did the abdominal biopsy to differentiate between multiple myeloma and amyloidosis. For me, this was done by an oncologist and did not involve my PCP at all. Have you seen an oncologist? I am not aware of anyone in Hawaii as I live in Pennsylvania. However, the Mayo Clinic in Rochester, Minnesota is a huge hub for amyloidosis research. If you are going to travel anywhere in the mainland from Hawaii, that is the place to go. But, Stanford in CA would be another option.
Is there an oncologist you can work with in your area to get things moving? It is not good to wait on this as organ damage can accrue over a short period of time. Who diagnosed your elevated light chains? How was that done? That is an indicator that someone could move on with more testing.
Let me know on the above and I can see what other suggestions there might be, too. Take care.
Aloha DBT,
QQuest Diagnostic Nichols Institute Valencia, VA., did my light chains on June 4 th, this year. My Kappa was 66.8, Lambs 35.9 and ratio 1.86, all high. My proteinurea is abnormal and doam in my urine. The Honolulu nephrologists said to consider fat pad or liver biopsy, my primary care refuses to refer me, possibly because there appears to be no one here on the big island and he doesn't want to spend the VA's money. I said I will pay out of pocket, no deal. My periphial neuropathy, and carpal tunnel progress fully are more debilitating and I know longer swimming or ride my bike which nhave been one of my koys in life.
Tomorrow, I talk with the patient advocate to go over my doctors head and get new tests, it has bee six months, and hopefully a new doctor and a fat pad biopsy to evaluate yes or no for AL Amyloidosis. If I have it, I have lost six months of inaction for the disease to progress, if I do have it, Whoopi, I can get on with my life though other problems still need care!
Thanks for cari g DBT
DBT said:
Hi Aloharoy,
Amyloidosis is a tough one to get diagnosed since so many doctors never even think of it. My doctors did a bone marrow biopsy in which they found plasma cells and then they did the abdominal biopsy to differentiate between multiple myeloma and amyloidosis. For me, this was done by an oncologist and did not involve my PCP at all. Have you seen an oncologist? I am not aware of anyone in Hawaii as I live in Pennsylvania. However, the Mayo Clinic in Rochester, Minnesota is a huge hub for amyloidosis research. If you are going to travel anywhere in the mainland from Hawaii, that is the place to go. But, Stanford in CA would be another option.
Is there an oncologist you can work with in your area to get things moving? It is not good to wait on this as organ damage can accrue over a short period of time. Who diagnosed your elevated light chains? How was that done? That is an indicator that someone could move on with more testing.
Let me know on the above and I can see what other suggestions there might be, too. Take care.
I would insist upon an abdominal biopsy. It is a relatively minor surgery and can be done quickly. I had the results back in two days and it clearly showed amyloidosis and I was into a specialist within 3 days. I started treatment within 3 weeks. Yes, you do need to push this. Please let me know how your meeting goes tomorrow.