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Again with the questions

by kristina on Tue May 07, 2013 8:42 pm

I am really trying to understand the different urine tests that detect K/L + Ratio and their reference ranges in order to diagnose MGUS. I had several urine test 12-18 months ago, that revealed an elevation in my K/L ratio. The first several test had to have been done on a regular urine analysis. Initially the K/L ratio was just elevated a little bit. It increased with each test, and my Kappa level also began to increase. The last test I had done I believe was done on a 24 hr. urine. The test said Urine QN, but I do not know what specific test it was.

My K/L Ratio was 16.84 mg/l (High) Reference range 2.04-10.37 mg/l
My Kappa was 79.00 mg/l (High) Reference range 1.35-24.19 mg/l
Lambda was in the normal range, but I don't have the amount.

I know that sFLC and serum PE done in 2012 were normal. My bone marrow biopsy in 2012 showed 7% plasma cells. I also had a kidney biopsy in 2012 which was fairly normal and I was told was not the cause of the K and K/L Ratio elevation. I know at some point a urine IFE was done and it was negative, but I do not know if it was done on a urinanlysis or on my 24 hour urine.

I have a local hematologist and a hematologist at KU Med Center. I had to get a consult with the KU hematologist at the request of another doctor due to another medical issue.

My confusion is that my local hematologist, who ran all these tests last year, told me in no uncertain terms that I DO NOT have MGUS. He said after all that testing, the elevations of the Kappa and ratio were polyclonal.

The doctor at KU told me in no uncertain terms that the elevations in the test above are monoclonal and that I HAVE MGUS. He based his diagnosis off those prior labs.

I am waiting on BMB results from the new hematologist. I do know that sFLC and SPEP done by the Dr. at KU came back normal.

Q1. Kappa or Lamda in the urine is the same thing as bence jones protein?

Q2. I am confused about which urine test was done that found the Kappa and ratio increase in the above mentioned test. I don't think I am understanding the difference between urine protein electrophoresis, urine immunofixation, and urine immunoelectrophoresis, and a quantitative Bence Jones protein test. I am assuming it was a quantitative Bence Jones since it should the levels of individaul K/L and then the ratio.

Q3. How is it determined wheather or not the Kappa/Lamda in the urine is monoclonal or polyclonal?

And a side note:I have elevations in Factor VIII and Von Willebrand, which have resulted in two pulmonary embolisms, and a stroke. I do not have Lupus, MS, or any other autoimmune issues that I know of, and they have tested me.
In 2010 I was diagnosed with hypogammaglobulinanemia and had 1 gamma globulin infusion due to low levels of total IgG and IgG subclass 1 and a pneumonia that was not resolving. Follow up testing on antibody levels since the infusion have all been in normal ranges, and they believe it was prednisone induced hypogammaglobulinanemia.

I am sorry this is such a long read. I appreciate anyone that can offer some clarification on any of this for me.

kristina
Name: Kristina
Who do you know with myeloma?: MGUS
When were you/they diagnosed?: April 25th 2013 KU Oncology Center
Age at diagnosis: 38

Re: Again with the questions

by Multibilly on Tue May 07, 2013 11:41 pm

Kristina,

Let's put aside the FLCs for a minute.

Do you have a paraprotein (M-spike) measurement? That would show up on your serum protein electrophoresis test and may be buried in some text on that test. Just the fact that you have 7% abnormal plasma cells in your original bone marrow test tells you that you have some sort of monoclonal gammopathy (SMM or MGUS).

If you an M-spike, then the degree of that spike will determine if it is MGUS or SMM. If you don't have an M-spike, but do have clonal FLC issues , then that that is a unique class of multiple myeloma.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Again with the questions

by kristina on Wed May 08, 2013 9:13 am

Hi M, thanks for replying. As far as I know, there was not an M-spike detected in either my urine or my blood, but my lab copies that showed the Kappa/Lambda tests went to the hematologist at KU. I had the abnormal levels written down, but I can't reference back to it to see if I missed something that indicated an M-spike. My local hematologist was adament that I didn't have one.

I am really just trying to understand how it could be that my Ratio and levels of Kappa increased over a period of 6 months without showing an M-spike (to my knowledge), and how it is determined if the increase in Kappa and the ratio is polyclonal or monoclonal. My history really screams MGUS (I failed to mention a broken rib that I had in 2010 without a known cause). But I also know that just because I have some flags for MGUS or multiple myeloma, doesn't necessairly mean I have it.

Thanks again for your time!

kristina
Name: Kristina
Who do you know with myeloma?: MGUS
When were you/they diagnosed?: April 25th 2013 KU Oncology Center
Age at diagnosis: 38

Re: Again with the questions

by Multibilly on Wed May 08, 2013 10:40 am

As always, remember that I'm not a doctor, so verify all this with your doc.

So, there is a condition called light chain multiple myeloma (formerly Bence Jones multiple myeloma), where you only have free light chains show up in your FLC assay, but no M-Spike.. The Freelite test tells you the quantities of kappa and lambda FLCs, whether one of these is present in excessive amounts and what the FLC ratio is. Excess FLCs are suggestive of the presence of monoclonal protein. The Freelite test doesn't tell you if these are polyclonal or monclonal, but again the excess amount of a given FLC and the FLC ratio are the clues here.

In summary:

You already know that you have 7% monoclonal plasma cells in your bone marrow from your earlier BMB. You absolutely have something going on.

You've got an excess FLC, which is consistent with the above, but the FLC ratio is what you need to really look at.

It sounds like you should double check if there is an M-Spike or not. You also likely had separate tests done to measure IgG, IgA, etc. Were any of these out of whack? This would give you another clue. I would think that if there were no M-Spike, that your SPEP would still tell you this fact.

If you truly have LCMM, I'm not sure how one stages it, but there are others on this site that have this condition and I'm sure they can chime in.

I had assumed you already had a xray skeletal survey done and that you had ruled out all the other letters in CRAB? But this may not be the case? You can figure this out from basic metabolic panel and xrays. Having an unexplained broken rib seems like good cause to get a skeletal survey or at least do an MRI or xray on that rib to look for lytic lesions.

Hope this helps.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Again with the questions

by kristina on Wed May 08, 2013 11:02 am

Hi M,

LCMM was something I was wondering about, I will have to do more research on that. I suppose I won't really know anything until I see the KU doctor in a couple weeks, and learn what my BMB shows. I did have a skeletal survey done, which was normal. The broken rib was 3 years ago, and it didn't show up on the initial X-Ray I had, but was found 3 months later when I had a CT done on my lungs. Unfortunatley, no one investigated the cause at the time. I know I have a pretty complex medical history and for me this has been on going since 2004 (but I have other medical issues). It's been difficult for anyone to determine what abnormal results mean in context of my clinical picture, and the things that they do know are wrong. I have heard from countless doctors of different specialities that they know something is wrong, they just don't know what, or that whatever it is, just isn't showing itself. This latest BMB was the 4th I have had. They have looked at MS, Lupus, Sarcoidosis, Scleraderma, different leukemia's-the list really goes on and on. By now, I have had so many x-rays, MRI's, CT's, etc. that I am suprised I don't glow at night and geiger counter's don't go off around me. I don't get too worked up about diagnosis any more, I have figured out that whatever is going on seems to be a slow process. I just like to understand what they are looking for, what they have found, and what the implications might be for me.

Thanks again for your thoughts!

kristina
Name: Kristina
Who do you know with myeloma?: MGUS
When were you/they diagnosed?: April 25th 2013 KU Oncology Center
Age at diagnosis: 38


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