[Shanise]

Diagnosed with MGUS, but is it really multiple myeloma?

by Shanise on Thu Jan 19, 2017 12:05 am

Hi,

I have experienced symptoms of MGUS over the years. In 2011 I got rashes on my cheeks and forehead, then I became warm to touch but had a normal body temperature. Over the years I started getting pins and needles feeling throughout my body. Last year, I started to bruise easy, have bone pain, brain fog, light headedness, light sensitivity along with other symptoms.

I also got a urinary tract infection last October, which I have never had in my life. I am 42. It was a Strep B infection. I read that people that get Strep B infection have underlying conditions that are immuno­com­promised. That scared me.

I went to see a hematologist / oncologist. She tested my immunoglobulin level and electro­phoresis. She told me that I didn't have cancer. I didn't learn that I had MGUS until consultation with my PCP from a release letter the hematologist / oncologist sent her. My PCP explained that I will need to be monitored. However, I am wondering why this doctor didn't inform me about MGUS. I had to find out what it was on my own.

I recently just got diagnosed with another urinary tract infection (Strep B again). So now it seems like I have symptoms of multiple myeloma, but my doctor says my levels are not high enough to warrant needing treatment. What should I do?

IgM 250 H
IgA 292 Normal
IgG 1398 Normal
Kappa light chains 3.01 H
Lambda light chains 1.67 Normal

All of my immunoglobulins are polyclonal. Serum electrophoresis levels are normal as well. The pathologist wrote on my report, "Essentially unremarkable study. No monoclonal protein detected."

[Multibilly]

Re: Diagnosed with MGUS, but is it really multiple myeloma?

by Multibilly on Thu Jan 19, 2017 7:11 am

Hi Shanise,

Welcome to the forum.

Given what you posted here, I am not even sure that you have any kind of plasma cell disorder, whether it be MGUS or myeloma. I say this because you stated that "All of my immunoglobulins are polyclonal. Serum electrophoresis levels are normal as well. The pathologist wrote on my report, 'Essentially unremarkable study. No monoclonal protein detected'.'' I assume you are stating that all of your immunoglobulins are polyclonal based on the results of a serum immunofixation test.

A diagnosis of IgM-kappa MGUS (or myeloma) would generally require that you have either monoclonal IgM and/or monoclonal kappa free light chains present and detected via serum immunofixation.

You might want to go back and ask why you got a diagnosis of MGUS if all of your immunoglobulins were indeed polyclonal. I'm not a doctor, but you might consider the following:

http://www.mayomedicallaboratories.com/test-catalog/Clinical%20and%20Interpretive/8158

"Increased serum immunoglobulin concentrations occur due to polyclonal or oligoclonal immunoglobulin proliferation in hepatic disease (hepatitis, liver cirrhosis), connective tissue diseases, acute and chronic infections..."

[Shanise]

Re: Diagnosed with MGUS, but is it really multiple myeloma?

by Shanise on Thu Jan 19, 2017 9:27 pm

Hi,

I thought that as well. I don't have any liver problems. I have a complete metabolic profile (CMP) done weekly as I work in a lab. My CBC was good. My ferritin level was 27, which I take iron for now.

I'm going back to see the hematologist / oncologist on the 31st. I figured she misdiagnosed me because my serum electrophoresis is normal as well as my immunofixation.

Thank you for your swift response. I just wonder what could be wrong with me. It's very depressing. I did have an infection control doctor tell me my IgM was high because I am fighting an infection. It is something going on with my body.