[NC Deb]

Skeletal survey results - need some help

by NC Deb on Tue Feb 18, 2014 4:20 pm

Hi! I am presently a MGUS (IgM kappa). Newly diagnosed, but a full skeletal xray was just done.No definite lytic lesions found, but the report says: apparent lucency" and "possible myelomatous lesion". Also, sclerotic density in parietal area of skull. nonspecific. I am very worried, and my neurologist has not gotten back to me yet. Would a bone marrow biopsy be done, or MRI? I want to get moving on this, even though I am just recently classified as MGUS. Thanks for any help!

[terryl1]

Re: Skeletal survey results - need some help

by terryl1 on Tue Feb 18, 2014 5:26 pm

Hi, were you classified as MGUS without a bone marrow biopsy? The bone marrow biopsy is the gold standard for diagnosing bone marrow disorders like myeloma and its precursors. It took a BMB to definitively diagnose me as I am light chain only and have no traditional M-spike.

[NC Deb]

Re: Skeletal survey results - need some help

by NC Deb on Tue Feb 18, 2014 6:52 pm

Hi, Terry,
Thanks for your reply. I have not yet had a BMB but I agree with you that it is needed to make a final determination. I went to a local large teaching hospital that has a great reputation. Unfortunately, it is easy for a patient to get overlooked at such a place. I need to be my own advocate and become an expert, like many of you here on this board. Wish me luck! Thanks again!

[NStewart]

Re: Skeletal survey results - need some help

by NStewart on Tue Feb 18, 2014 9:52 pm

I suggest that you make an appointment with a Myeloma specialist and have a full work up of blood tests, 24 hour urine and BMB. It also might be advisable to have an MRI or PET/CT to evaluate the things that were spotted on your skeletal survey more thoroughly. If you have been diagnosed as being at the MGUS stage it is very important that your are being followed by a hematologist/oncologist at the very least.

Nancy in Phila

[NC Deb]

Re: Skeletal survey results - need some help

by NC Deb on Wed Feb 19, 2014 12:30 am

Thanks, Nancy - I'll definitely do that!

[NC Deb]

Re: Skeletal survey results - need some help

by NC Deb on Fri Feb 21, 2014 5:23 pm

Update: The neurologist finally got back to me and is referring me to a hematologist/oncologist. Hoping to get the BMB to find out what's going on. And, hoping they will refer me to a myeloma specialist as well. I want to get the ball rolling, I'm not one who can sit patiently on the sidelines, I guess! I've certainly gotten a lot of good info here from all of you terrific members.