[jrnlmkr]

Diagnosed with MGUS, but is it something more?

by jrnlmkr on Sun May 31, 2015 10:27 am

After abnormal protein showed up in a routine blood test, my GP sent out for further testing and told me I have MGUS. She also told me there is no protein in my urine and I have no anemia, so it is probably nothing, but insisted I see an oncologist, which I did on Friday.

The oncologist took more blood, telling me none of the previous tests were to check for the quantity of abnormal protein, but that the bad protein in my blood was the best of the three kinds. However, she quickly ran some of my blood in the office and decided I had dropped into slight anemia, which was of concern to her (despite being 55 years old, I still get my period and had just finished). In addition, I'd just been ill after a trip to Rio with lots of diarrhea and she thought that could have contributed.

The hunt for what is wrong started because I'd been having strange body tingling since January that now seems to be limited to my fingers and toes. A neurologist has told me he is convinced it isn't a neurologic problem. Not sure what to think. Any ideas?

[Multibilly]

Re: Diagnosed with MGUS, but is it something more?

by Multibilly on Fri Jun 05, 2015 9:32 pm

Hi jrnlmkr,

It sounds like your oncologist must have at least run what is called an immunofixation text to tell you what kind of "abnormal" protein you have.

If you are showing signs of being anemic, have "tingling" and have tested positive for an "abnormal protein", then there are some additional tests that should be run by a multiple myeloma specialist (not just a general oncologist/hematologist) to better determine your exact diagnosis and situation. All of these symptoms can be explained by a monoclonal gammopathy such as MGUS, but it is important to have a multiple myeloma specialist make that determination.

I'm guessing that if your oncologist said that you have the "best" of the possible three kinds of protein, that he/she probably means that they detected the presence of monoclonal IgG immunoglobulins (with the two other most common immunoglobulin proteins being IgA and IgM).

If you let us know what city you live in, folks on this site can recommend facilities and/or specific specialists to seek out.

[jrnlmkr]

Re: Diagnosed with MGUS, but is it something more?

by jrnlmkr on Wed Jul 01, 2015 7:24 pm

i live in new york city. the oncologist sent me out for full body X-rays which came back totally negative. she recommended i wait for a bone marrow biopsy at this point, though gave me an option of one if i thought it would put my mind at ease. i instead chose to come back every three months for more blood work. we decided together if there is any change next time, i'll get the biopsy.