After many years of anemia, large RBC's, easy bruising, my doctor ordered some additional testing, showing an m-spike in the gamma region of my liver, as well as protein in my urine. They have since identified two lesions on my cervical spine. My PCP had done these tests after I had complained of excessive exhaustion, night sweats, and severe back and rib pain.
So here is my question: I have MGUS now. My understanding is that MGUS in and of itself is asymptomatic. Because I am having symptoms, does this push it into the smoldering stage? I also don't understand how they can say the average onset of multiple myeloma is 8 years post MGUS diagnosis, when I don't truly know when the MGUS should have been diagnosed. Does anyone know the percentage of patients with MGUS that are diagnosed with either smm or multiple myeloma, right away?
I just had a test come back saying Immunofiz ID Serum: Monoclonal lg G Lambda. Don't know what the heck that means. Next Monday I go for mri of brain, cervical, thoracic, then bone marrow biopsies the next day, back to oncology the following day. Scared out of my mind.
Thank you for anything, any little piece of information you can give me.
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Megoreilly - Name: Kimberly James
- Who do you know with myeloma?: Me :-(
- When were you/they diagnosed?: September 2, 2011
- Age at diagnosis: 46
Re: Newbie needing guidance
Hello Meg,
As Mr.Spock in Star Trek would say......this does not compute.
MGUS does not cause lesions in the spine or anemia. I am not sure what you mean by m-spike in the gamma region of your liver. Protein in your urine may or may not be abnormal.
If you have not seen an hematologist/oncologist yet you need to. Only a specialist can tell you whether or not you have active myeloma versus MGUS.
It sounds as though an oncologist IS doing the complete workup with an MRI and a bone marrow biopsy. Once these results are available you should have your answer as to whether or not you have symptomatic multiple myeloma.
I understand how difficult it is to wait for definitive answers but I think you need to be patient for the next few days. It sounds like you are on the right track.
You may benefit from doing some more reading about MGUS and myeloma. Reading more will help you to understand what the oncologoist says. There is alot of good information on this under the "Resources " tab on the Beacon and also at the MGUS tag page,
https://myelomabeacon.org/tag/mgus/
which lists all Beacon news articles that cover MGUS-related issues.
In addition, under "Links" there are many, many connections to other excellent myeloma resources. I would recommend you look at the International Myeloma Foundation (IMF) website and the Leukemia and Lymphoma Society (LLS) website to start.
As Mr.Spock in Star Trek would say......this does not compute.
MGUS does not cause lesions in the spine or anemia. I am not sure what you mean by m-spike in the gamma region of your liver. Protein in your urine may or may not be abnormal.
If you have not seen an hematologist/oncologist yet you need to. Only a specialist can tell you whether or not you have active myeloma versus MGUS.
It sounds as though an oncologist IS doing the complete workup with an MRI and a bone marrow biopsy. Once these results are available you should have your answer as to whether or not you have symptomatic multiple myeloma.
I understand how difficult it is to wait for definitive answers but I think you need to be patient for the next few days. It sounds like you are on the right track.
You may benefit from doing some more reading about MGUS and myeloma. Reading more will help you to understand what the oncologoist says. There is alot of good information on this under the "Resources " tab on the Beacon and also at the MGUS tag page,
https://myelomabeacon.org/tag/mgus/
which lists all Beacon news articles that cover MGUS-related issues.
In addition, under "Links" there are many, many connections to other excellent myeloma resources. I would recommend you look at the International Myeloma Foundation (IMF) website and the Leukemia and Lymphoma Society (LLS) website to start.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
2 posts
• Page 1 of 1