[richiedaz]

Recently diagnosed with MGUS, but is it more?

by richiedaz on Fri Feb 12, 2016 12:39 pm

Hi, my name is Rich. I am a 56 year old firefighter in Arizona. Last week I was diagnosed with MGUS after 4 years of blood work, many doc appointments and doctors. The doctor is worried because I show many symptoms and MGUS has no symptoms., My symptoms are severe fatigue, restlessness, inability to concentrate, and general achiness all over. The fatigue is the worst.

My blood test results showed one IgG kappa monoclonal protein in the gamma region, and a wbc count of 3.7, rbc 5.13. Now I found out my B2 microglobulin blood test showed high at 3.08.

My follow up appointment is not for 2 weeks.

Do you think I am in the smoldering phase of myeloma or stage one?

Kind of worried at this point.

[SK1]

Re: Recently diagnosed with MGUS, but is it more?

by SK1 on Fri Feb 12, 2016 4:29 pm

Hi Rich,

If I were in the same boat I'd see a myeloma specialist, especially as you're understandably worried.

Good luck!

[DianeM]

Re: Recently diagnosed with MGUS, but is it more?

by DianeM on Fri Feb 12, 2016 5:52 pm

Hi Rich -

I live in Phoenix, Arizona and was diagnosed with MGUS over 4 years ago. Are you seeing an oncologist and, if so, which practice? I was initially assessed at AZ Oncology (several locations) and testing evaluated at the Mayo Clinic. I agree with SK1 and would see a specialist. The waiting is the worst part.

Take care, Diane

[Multibilly]

Re: Recently diagnosed with MGUS, but is it more?

by Multibilly on Sat Feb 13, 2016 5:38 pm

Hi Rich,

Welcome to the forum. Unfortunately, it has been suggested that firefighters tend to be more prone to develop MGUS and multiple myeloma due to their repeated exposure to various chemicals and hazardous substances.

Do you know what your serum M-spike (aka monoclonal protein, paraprotein, M-protein, abnormal protein band, etc) level from your serum protein electrophoresis test is? Do you know what your serum lambda and kappa free light chain levels are?

Also, what's your hemoglobin level, calcium and creatinine levels? If you are very fatigued, anemia (low hemoglobin level) would be the classic thing to check first.

Additionally, have you had a bone marrow biopsy and a full body skeletal xray survey, whole body PET/CT or whole body MRI?

The Mayo clinic in Scottsdale has some top multiple myeloma specialists. In particular, Dr. Joseph Mikhael has an excellent reputation there. As others have mentioned, there is no substitute for working with a top multiple myeloma specialist.

Best of luck to you.