[jhorner]

Is a BMB positive with amyloidosis or LCDD?

by jhorner on Tue Feb 10, 2015 10:26 am

Hello,

I am a smoldering patient who has been sick for years. I'm currently on full time IVIG therapy, which manages most of my symptoms, and I mostly feel fortunate for being able to receive this treat­ment. However, when I am in between treatments, I feel terrible. So much so, that I scour the Internet looking for plausible causes for my symptoms. This month in between infusions I am scheduled to have neurological testing completed for neuropathic pain and I also have ALL the symptoms of autonomic dysfunction as well.

My question is does this severity of neurological symptoms occur with multiple myeloma or is light chain deposition disease (LCDD) or amyloidosis a more likely cause? I have never had my urine tested, but I had a fat pad biopsy back in 2012 when I was first diagnosed and it was negative.

My bone marrow biopsy (BMB) at DFCI showed 10-20% of plasma cells in 2013, so I was wondering if anyone knows if either of those disease states typically has a plasma cell percentage in the marrow or if they are limited to proteins in the blood and tissue?

I posed this question to my oncologist but I am interested in hearing from folks who have either of this conditions and can provide any insight as well. Thank you.

J

[Dr. Jatin Shah]

Re: Is a BMB positive with amyloidosis or LCDD?

by Dr. Jatin Shah on Mon Feb 16, 2015 11:02 pm

In amyloidosis or LCDD, the bone marrow plasma­cy­tosis (plasma cell percentage) tends to be on the smaller side, but there is no correla­tion between the degree of plas­ma­cytosis and amyloidosis.

Neuropathy can be seen in myeloma, amyloidosis, and POEMS (all of which are plasma cell dyscrasias).

It is important to recognize that there is a variability in the testing for amyloidosis, If there is a high clinical suspicion, including neuropathy, I would discuss with your doctor the possibility of a repeat fat pad biopsy. There is also a role for a nerve biopsy to help identify if there is amyloid deposition on the nerves. These can be addressed with the neurology evaluation you are soon to have.

[jhorner]

Re: Is a BMB positive with amyloidosis or LCDD?

by jhorner on Tue Feb 17, 2015 1:30 pm

Thank you very much Dr. Shah! I was able to determine that there is a bone marrow percentage with all plasma cell dyscrasias. The original read on my BMB was 12% and then DFCI read the same slides and indicated 10-20% so I'm assuming I'm somewhere between 10-15%, which I believe is the lower side.

The initial neurological testing was positive for heterogeneous neuropathy. I think homogeneous is most common with amyloid and LCDD, so continued testing will hopefully rule out amyloidosis.

I am still waiting to talk to my oncologist but when I do I will suggest another fat pad biopsy. Thank you again for your response.
J