[reneeabbott]

Can Bence Jones protein show up once & then go away?

by reneeabbott on Sat Sep 03, 2016 12:59 pm

For the past 3 years, I have not been feeling good. A lot of pain in my ribs, back, neck, and hips. My doctor back in 2013 did blood work that detected Bence Jones protein and also high total protein electrophoresis. Alpha 2 globulin high, creatinine high, CRP high. I was never told that any of these were a concern, nor did I know that about the Bence Jones protein test. I have been studying up on this and my question is this.

Can Bence Jones protein show up in your urine and then go away? Once it is detected, is it always detected?

I am VERY upset with my doctor for not telling me about this. Does it look like I have multiple myeloma?

[Jonah]

Re: Can Bence Jones protein show up once & then go away?

by Jonah on Sat Sep 03, 2016 2:45 pm

I'm not an expert, but I believe there is a reasonable margin of error with qualitative Bence Jones urine tests – i.e., the kind of tests that just say whether or not Bence Jones protein is present in the urine (yes, it's present, or no, it's not present). The qualitative test could falsely read positive for Bence Jones protein when none is actually present.

I believe the likelihood of a false positive is lower in the case of a quantitative test, where the amount of Bence Jones protein is actually measured.

Even in that case, a doctor may decide after further testing that the Bence Jones test was falsely positive if there is no sign of a monoclonal protein in blood tests, which are more sensitive than urine tests when it comes to detecting production of monoclonal proteins.

So your doctor may have done additional blood tests, such as a serum (blood) protein electrophoresis (SPEP), serum immunofixation electrophoresis (IFE or sIFE), and serum free light chain (sFLC) assay, and determined that a monoclonal protein disorder is not the cause of the symptoms you describe.

Without those tests – and, most likely, others – it would be impossible at this point to say whether or not you have multiple myeloma. It is not a disease diagnosed solely on the basis of how a patient feels. The blood tests I just mentioned are critical, as are the results of imaging (xrays, MRIs, PET/CT, etc.); hemoglobin, serum creatinine, and serum calcium levels; and usually a bone marrow biopsy, as well.

See this article for a description of the criteria for diagnosis multiple myeloma:

Rajkumar, SV, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014

Hope this helps. Good luck in determining the source of the pain you've been experiencing.

[Multibilly]

Re: Can Bence Jones protein show up once & then go away?

by Multibilly on Sat Sep 03, 2016 6:21 pm

As usual, Jonah has good advice. I would suggest just going back to your doctor's office and asking for copies of all the earlier blood tests, especially the ones that Jonah mentions above and the most recent CBC and comprehensive metabolic panels. Those test results are your property.

You simply don't want to try to guess about the situation without having the results of those aforementioned tests.