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Amyloidosis alone??!!

by blessthischick on Thu Feb 20, 2014 5:00 pm

Hello Folks :D

It's great to be on a site with such knowledgeable and informative members :D I am wondering if anyone can help?

I had a bmb on the 3rd Sept last year which showed a plasma cell dyscrasia of under 10%, I have an abnormal flc ratio:

My flc’s in sept: free kappa of 9.67, free lambda of 371.39 & a ratio of 0.026 (locally)
My flc’s in oct: free kappa of 9.9, free lambda of 286 & ratio of 0.03 (NAC)

and a positive Bence Jones urine. There was also an incidental finding of Amyloid tissue which has muddied the waters even more. A trip down to the National Amyloidosis Centre in London confirmed my organs are clear and I did not have AL Amyloidosis . NAC told me SMM and my haem consultant told me MGUS and to make things even more confusing for me, NAC say there is a possibility that I will develop Al Amyloidosis so I am watching and waiting for signs of multiple myeloma/AL Amy and indeed there is a possibility I could have both!? And then I read yesterday that people with myeloma can develop amyloidosis (approx 20%) but not the other way around. So it occurred to me that with the above results there is still a possibility that I have amyloidosis alone? Am I right in saying this?

Apparently I had no monoclonal band detected…what does this mean? Is it something to do with my disease being non-secretery? I have values for Ig’s as well from the NAC which are all apparently normal. I seem to be bombarding you with questions, but would be great to have your opinions on this. Many thanks.

Best wishes

Kay :D

blessthischick
Name: Blessthischick
Who do you know with myeloma?: Me (SMM)
When were you/they diagnosed?: Oct 10th 2013
Age at diagnosis: 46

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