[ll88]

Do I have MGUS, multiple myeloma, or something else?

by ll88 on Fri May 06, 2016 7:54 pm

It seems to take forever to see a specialist - poor communication between my doctors. It is usually my insurance company but not this time.

I have had intermittent bone pain since the end of 2011. I also have widespread pain, so I was diagnosed with fibromyalgia. I had severe mercury poisoning, as well as Stevens Johnson Syndrome (multiple times), so thought the exhaustion and other symptoms were due to these. I have had intermittent visceral pain (mostly in the area where my spleen is located). They found that my liver is fatty and enlarged, but nothing on the ultrasound on my left side. I have also had periodic chest pain, as well a intermittent tingling, pins and needles in my feet; lately it wakes me up.

I was hospitalized last July and labs showed my IgG was slightly high and IgM was low. They repeated the test again a couple months ago and it was the same. Now the other serum tests have come back. I have an abnormal protein band 1 of 1.2 g/dL and lambda light chain of 30.5 mg/L (kappa within normal range). My platelet count is only slightly high. I remember M-protein in my urine test awhile ago (I don't remember the date).

Some days the bone pain is severe,other days it is mild. Lately, I do only a small task, like brush my hair, and I am out of breath. I feel like I am going to pass out when I stand in place.

I am hoping I would be in the category of monoclonal gammopathy of undetermined significance (MGUS), but after reading some of the comments here I am concerned it is multiple myeloma.

Any thoughts are welcome. Thank you!

[Multibilly]

Re: Do I have MGUS, multiple myeloma, or something else?

by Multibilly on Fri May 06, 2016 9:50 pm

Hi ll88,

Welcome to the forum, but sorry you find yourself dropping in here.

You can't tell from these tests alone if you have MGUS, smoldering multiple myeloma, multiple myeloma, or some related condition such as amyloidosis. But you definitely have some sort of plasma cell disorder if you have an abnormal protein band (M-spike) of 1.2 g/dL and M-protein (Bence Jones proteins) in your urine

Given you have bone pain and an abnormal protein band, your doctor will likely be recommending a whole body MRI or PET/CT scan to look for any multiple myeloma-related bone damage. At a minimum, you should at least get a whole-body xray survey.

You also want to go back and look at your hemoglobin, calcium, and creatinine levels (found on your CBC and metabolic test reports) and report back on those values (including their normal ranges).

What actually was your kappa free light chain value? That may also help provide a clue.

You also likely have enough symptoms here to warrant doing a bone marrow biopsy, which would also be key in determining what kind of plasma cell disorder you might have.

Given your visceral pain, chest pain, liver issues, tingling and fatigue, I might also suggest that your specialist rules out amyloidosis (this requires a simple biopsy of a suspected organ or a preliminary, although not always conclusive, test for it can be performed when you get a bone marrow biopsy).

Lastly, there is no substitute for working with a top multiple myeloma specialist if you are being diagnosed with some sort of plasma cell disorder. If you let us know what city you are in, folks can recommend some top myeloma specialists or facilities in your area.

Hope this helps a bit.