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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

Could I have multiple myeloma or smoldering myeloma?

by Gary Huttman on Wed Aug 10, 2011 10:28 am

Hi, I have been diagnosed with three separate areas of bone lesions: skull, cervical spine (neck) and pelvis by MRI, cat scans, whole body bone scans and regular x-rays. My family doctor ran all other tests for multiple myeloma (M protein, blood and urine, plasma cell and some others, but all came back negative for multiple myeloma. I was then referred to an oncologist who also was baffled but said I do not have multiple myeloma.

I do not have pain in those areas and have no other symptoms. I’m still not sure what is really going on and neither do the doctors I have seen.

Could I have smoldering myeloma even though all other tests are negative except for bone lesions? When should I have tests repeated? Should I seek other opinions from specialists?

I am very confused and concerned that I still have no answers after many, many tests.

Gary Huttman

Re: Could I have multiple myeloma or smoldering myeloma?

by Dr. Edward Libby on Thu Aug 11, 2011 10:51 am

Hello Gary,

The character of the bone lesions is important, e.g. are they lytic or sclerotic ? Do you have other symptoms or signs like neuropathy, endocrine problems, or enlarged organs (liver / spleen) ? Bone lesions can represent cancers other than myeloma as well. As I am not your treating physician, I cannot really have the full perspective on this.

It is true in general that if your serum protein electrophoresis (SPEP), urine protein electro­phoresis (UPEP), and serum free light chains (FLC) are all normal, it is highly unlikely that you could have myeloma.

You should consider seeing a myeloma specialist / team in a referral center, as they will have more expertise in bone lesions in general. There are some rare diseases that can look like myeloma but that are quite different. These include osteosclerotic myeloma and POEMS syndrome.

Dr. Edward Libby
Name: Edward Libby, M.D.
Beacon Medical Advisor

Re: Could I have multiple myeloma or smoldering myeloma?

by DebbieJ54 on Sat Jan 02, 2016 8:58 am

Hi Gary,

I have osteo­sclerotic myeloma. BUT, it did show up in the blood work as a very small m-spike (only 0.41 g/mll). No lytic lesions anywhere, but several sclerotic lesions. My doctors were all baffled because this is not typical myeloma. After seeing 2 myeloma specialists, they were able to give me a diagnosis. I did have signs in the blood work and subsequent bone marrow biopsy.

There can be other reasons for lesions of bone that are not related to myeloma. It might warrant more investigation. It can be frustrating when a diagnosis isn't clear.

DebbieJ54


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