Hello, I am very thankful I found this forum. I am currently undergoing testing and waiting for the rest of my results. My original serum testing from my rheumatologist showed I had an M-spike of 0.8 g/dL. After a referral to see a hematologist a few weeks later, my serum test showed an M-spike of 1.0 g/dL. Some of my test results are in, but I am still waiting on what I think may be the more important ones for a diagnosis.
I have learned a lot from reading everyone's posts and feel like the knowledge will help me when I return to my doctor to understand the diagnosis.
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Re: New on here and currently going through testing
Welcome to the forum, kjake.
With a monoclonal protein level of 0.8-1.0 g/dL, you have a plasma cell disorder of some type. It could be something like monoclonal gammopathy of undetermined significance (MGUS) or smoldering multiple myeloma, which do not require treatment, and which may never progress to a stage where treatment is required.
Other possible diagnoses include a solitary plasmacytoma, multiple myeloma, amyloidosis, Waldenstrom's macroglobulinemia, POEMS syndrome, or primary plasma cell leukemia, all of which generally are treated.
If you look up reference articles on the Internet about the different conditions I just listed, and review information about the diagnostic criteria for each of the conditions, you will get a sense of the kinds of tests your doctor should be using to determine which of the diagnoses is correct for you. You should know, however, that the diagnostic criteria for multiple myeloma and smoldering myeloma have changed within the past year or so. This article discusses the new criteria:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
If you have not done so already, you should consider arranging a consultation with a myeloma specialist. Myeloma specialists are haematologist / oncologists who focus on diagnosing and treating plasma cell disorders such as myeloma. General haematologists / oncologists are not as focused, handling other blood cancers such as leukaemia and lymphoma in addition to the plasma cell disorders. A myeloma specialist will be best not only at getting you the correct diagnosis, but also in determining the best treatment for your disease. The specialists usually are at academic research centers, so they will be more likely to get you access to a clinical trial, which could be a useful option to have.
People here in the forum can help point you to a myeloma specialist close to you if you give us a sense where you are located. If you are in the States, there is a list of myeloma treatment centers here:
https://myelomabeacon.org/treatment-centers/
Good luck!
With a monoclonal protein level of 0.8-1.0 g/dL, you have a plasma cell disorder of some type. It could be something like monoclonal gammopathy of undetermined significance (MGUS) or smoldering multiple myeloma, which do not require treatment, and which may never progress to a stage where treatment is required.
Other possible diagnoses include a solitary plasmacytoma, multiple myeloma, amyloidosis, Waldenstrom's macroglobulinemia, POEMS syndrome, or primary plasma cell leukemia, all of which generally are treated.
If you look up reference articles on the Internet about the different conditions I just listed, and review information about the diagnostic criteria for each of the conditions, you will get a sense of the kinds of tests your doctor should be using to determine which of the diagnoses is correct for you. You should know, however, that the diagnostic criteria for multiple myeloma and smoldering myeloma have changed within the past year or so. This article discusses the new criteria:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
If you have not done so already, you should consider arranging a consultation with a myeloma specialist. Myeloma specialists are haematologist / oncologists who focus on diagnosing and treating plasma cell disorders such as myeloma. General haematologists / oncologists are not as focused, handling other blood cancers such as leukaemia and lymphoma in addition to the plasma cell disorders. A myeloma specialist will be best not only at getting you the correct diagnosis, but also in determining the best treatment for your disease. The specialists usually are at academic research centers, so they will be more likely to get you access to a clinical trial, which could be a useful option to have.
People here in the forum can help point you to a myeloma specialist close to you if you give us a sense where you are located. If you are in the States, there is a list of myeloma treatment centers here:
https://myelomabeacon.org/treatment-centers/
Good luck!
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• Page 1 of 1
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