The doctors aren't sure at this point as to what is wrong with me. I was hospitalized about a week ago. They ran a lot of neurological tests and just a few results came back odd . My urine kappa free light chains were high at 22.8 mg/L and the urine free kappa/lambda ratio was 22.80. My blood test for kappa and lambda were normal.
I'm usually a little anemic and rdw high. Calcium level is in the normal range. I'm tired alot and just feel like my brain is fuzzy. My legs feel like I have been running a marathon, they hurt along with my back. (I have a unknown clotting disorder and I am on warfarin.) (It was the neurologist who ran all of these tests.)
Every time I research this multiple myeloma or amyloidosis come up.
Just wondering on what first came about when you were diagnosed.
I haven't been feeling well, and have some neurological symptoms and had a mri on my brain. Because of my age the neurologist and my family doctor were looking at many things, including ms.
Any advice or input appreciated. My family doc is researching the light chains and is getting in contact with my hematologist.) My doc isn't sure as to the next step but he is going to keep looking for me and is looking into more testing to see if I have multiple myeloma or amyloidosis. He did mention possible bone marrow biopsy, but wants to talk with my hematologist about this..
I know that this post has scattered information but I have a hard time thinking at the moment. The main thing is that I would like to know how you all were diagnosed, if it took a while and were your urine light chains elevated? Advice input appreciated.
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Re: Looking for input on initial test results
Tested for m-component?
This is at least one of the next steps to take. If m-component is present you do have multiple myeloma or you may or may not get it later. The presence of m-component will in many cases not lead to multiple myeloma, but it can do so.
"People will sometimes develop a condition called MGUS (Monoclonal gammopathy of undetermined significance), where there is overproduction of one antibody but the condition is benign (does not threaten the patient's health)." (http://en.m.wikipedia.org/wiki/Myeloma_protein)
If you do not have any unexpected bone fractures, no problematic kidney related tests or high calcium levels in your blood tests, it is at least a good sign. It may not be multiple myeloma or if it is multiple myeloma it may be at a very early stage.
But here I would rely on specialists. Forums like this are important, but when it is about the specific diagnosis laypersons like me are ... laypersons.
If there are good reason to suspect multiple myeloma, then a specialist in multiple myeloma should be involved at once. The treatments are evolving fast and results improve. Therefore the team responsible for deciding the course to take need to be up to date with the latest acknowledged procedures.
This is at least one of the next steps to take. If m-component is present you do have multiple myeloma or you may or may not get it later. The presence of m-component will in many cases not lead to multiple myeloma, but it can do so.
"People will sometimes develop a condition called MGUS (Monoclonal gammopathy of undetermined significance), where there is overproduction of one antibody but the condition is benign (does not threaten the patient's health)." (http://en.m.wikipedia.org/wiki/Myeloma_protein)
If you do not have any unexpected bone fractures, no problematic kidney related tests or high calcium levels in your blood tests, it is at least a good sign. It may not be multiple myeloma or if it is multiple myeloma it may be at a very early stage.
But here I would rely on specialists. Forums like this are important, but when it is about the specific diagnosis laypersons like me are ... laypersons.
If there are good reason to suspect multiple myeloma, then a specialist in multiple myeloma should be involved at once. The treatments are evolving fast and results improve. Therefore the team responsible for deciding the course to take need to be up to date with the latest acknowledged procedures.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Looking for input on initial test results
Hi Jules,
Sorry to hear about the health issues you've been having lately. You've come to a good place, however, for information and help. None of us here, not even the myeloma specialists who help answer questions that people here have, can diagnose you, because we'll never be able to know as much about your case as your own physicians. But you'll still get a lot of useful advice.
You can read a lot of stories about how people here were diagnosed with myeloma in the "Member Introductions" section of the forum,
As you read the stories there, you'll find that, in many cases, it took a long time for people to be correctly diagnosed by their physicians. In other cases, the symptoms were so clear the first time people sought medical care that the diagnosis was very quick.
You shouldn't let the variation in these experiences, however, make you think that diagnosing someone with multiple myeloma is some sort of black art. When the diagnosis takes a long time, it's almost always because the physicians weren't thinking about multiple myeloma for most of the time.
In reality, there are clear criteria for establishing whether someone has multiple myeloma or its earlier stages (smoldering myeloma, also called asymptomatic myeloma, and "MGUS").
To be diagnosed with multiple myeloma, all of the following criteria have to be met:
1. Clonal plasma cells >10% on bone marrow biopsy or in a biopsy from other tissues
2. A monoclonal protein (paraprotein, "M-spike") in either serum or urine
3. Evidence of end-organ damage felt related to myeloma, as evidenced by at least one
of the following (which are known as the "CRAB" criteria):
a. HyperCalcemia (corrected calcium >2.75 mmol/L)
b. Renal insufficiency attributable to myeloma
c. Anemia (hemoglobin <10 g/dL)
d. Bone lesions (lytic lesions or osteoporosis with compression fractures)
For someone to be diagnosed with either smoldering myeloma or MGUS, similar criteria are used, with the key issue being whether or not the patient has any of the "CRAB" symptoms. If they do, and the symptoms are attributable to the myeloma, the diagnosis can't be smoldering myeloma or MGUS.
A common source of information you'll often see referenced here in the forum for the criteria for diagnosing multiple myeloma, smoldering myeloma, and MGUS is the Wikipedia article on multiple myeloma. Here's a link to the key section:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
It seems that what you need to do is get some additional tests done to measure your monoclonal protein / paraprotein levels, have a bone marrow biopsy, and probably a complete x-ray survey of your bones. These tests probably should be arranged by a hematologist / oncologist who will know what to look for in the results, and also will be able to distinguish between results that indicate multiple myeloma and results that indicate amyloidosis. (There are other tests necessary to determine if you have amyloidosis.)
I hope this helps a bit. Let us know if you have any additional questions, and please keep us posted on what you find out.
Sorry to hear about the health issues you've been having lately. You've come to a good place, however, for information and help. None of us here, not even the myeloma specialists who help answer questions that people here have, can diagnose you, because we'll never be able to know as much about your case as your own physicians. But you'll still get a lot of useful advice.
You can read a lot of stories about how people here were diagnosed with myeloma in the "Member Introductions" section of the forum,
As you read the stories there, you'll find that, in many cases, it took a long time for people to be correctly diagnosed by their physicians. In other cases, the symptoms were so clear the first time people sought medical care that the diagnosis was very quick.
You shouldn't let the variation in these experiences, however, make you think that diagnosing someone with multiple myeloma is some sort of black art. When the diagnosis takes a long time, it's almost always because the physicians weren't thinking about multiple myeloma for most of the time.
In reality, there are clear criteria for establishing whether someone has multiple myeloma or its earlier stages (smoldering myeloma, also called asymptomatic myeloma, and "MGUS").
To be diagnosed with multiple myeloma, all of the following criteria have to be met:
1. Clonal plasma cells >10% on bone marrow biopsy or in a biopsy from other tissues
2. A monoclonal protein (paraprotein, "M-spike") in either serum or urine
3. Evidence of end-organ damage felt related to myeloma, as evidenced by at least one
of the following (which are known as the "CRAB" criteria):
a. HyperCalcemia (corrected calcium >2.75 mmol/L)
b. Renal insufficiency attributable to myeloma
c. Anemia (hemoglobin <10 g/dL)
d. Bone lesions (lytic lesions or osteoporosis with compression fractures)
For someone to be diagnosed with either smoldering myeloma or MGUS, similar criteria are used, with the key issue being whether or not the patient has any of the "CRAB" symptoms. If they do, and the symptoms are attributable to the myeloma, the diagnosis can't be smoldering myeloma or MGUS.
A common source of information you'll often see referenced here in the forum for the criteria for diagnosing multiple myeloma, smoldering myeloma, and MGUS is the Wikipedia article on multiple myeloma. Here's a link to the key section:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
It seems that what you need to do is get some additional tests done to measure your monoclonal protein / paraprotein levels, have a bone marrow biopsy, and probably a complete x-ray survey of your bones. These tests probably should be arranged by a hematologist / oncologist who will know what to look for in the results, and also will be able to distinguish between results that indicate multiple myeloma and results that indicate amyloidosis. (There are other tests necessary to determine if you have amyloidosis.)
I hope this helps a bit. Let us know if you have any additional questions, and please keep us posted on what you find out.
Re: Looking for input on initial test results
Thank you for the advice and input.
Doc just called me and, after talking to my hematologist, he is going to wait and see if I get better. Wants to recheck with neurology in a week. They will re-do the test for the urine light chains in a month and if it is elevated then they will investigate more.
I am going to call back and ask for a bone scan or something due to the pain I have. I really don't know what to do. I'm at a loss here.
Doc just called me and, after talking to my hematologist, he is going to wait and see if I get better. Wants to recheck with neurology in a week. They will re-do the test for the urine light chains in a month and if it is elevated then they will investigate more.
I am going to call back and ask for a bone scan or something due to the pain I have. I really don't know what to do. I'm at a loss here.
Re: Looking for input on initial test results
Q: Did you have a blood test for paraprotein level?
A: This is what usually gets you referred to a heamatologist, then if you have other symptoms that are possible myeloma symptoms, such as bone pain / anemia, they do a skeletal survey then a bone marrow biopsy if any lytic lesions on x-rays.
This is my experience only, and I was only referred to heamatology after a year as I kept asking. I'm in the UK, though, where are you? It's very different in the USA and other countries - seems that you get a lot more testing in the US.
GOOD LUCK
A: This is what usually gets you referred to a heamatologist, then if you have other symptoms that are possible myeloma symptoms, such as bone pain / anemia, they do a skeletal survey then a bone marrow biopsy if any lytic lesions on x-rays.
This is my experience only, and I was only referred to heamatology after a year as I kept asking. I'm in the UK, though, where are you? It's very different in the USA and other countries - seems that you get a lot more testing in the US.
GOOD LUCK
Re: Looking for input on initial test results
Hi all,
Thank you for your responses. My doc consulted my hematologist who wanted it rechecked in a month.
My levels based on urine testing a month ago were:
Free kappa light chains at 22.8 mg/L
Free lambda Light chains at 1.0 mg/L
Kappa/lambda ratio 22.80
When the doc rechecked it this week, 1 month later, the results were:
Free kappa light chains at 29.7 mg/L
Free lambda light chains at 1.7 mg/L
Kappa/lambda ratio 17.47 mg/L.
No one has told me what this means, just that it looked better and they would recheck in 6 months. I have asked for a 2nd opinion on my symptoms due to the docs not knowing what to do here and trying to tell me that stress is causing the symptoms. I was not overly stressed at the time.
My question is this how high do the proteins need to be before they are concerned there is something going on?
Research pointed me here saying that healthy urine does not have Bence Jones proteins and that it takes a lot of build up before your urine secretes this.
Should I be concerned and want more tests to see if I have amyloidosis, multiple myeloma early, or something like this going on?
To me, the results don't look better, but I am new to all this.
Thank you for your responses. My doc consulted my hematologist who wanted it rechecked in a month.
My levels based on urine testing a month ago were:
Free kappa light chains at 22.8 mg/L
Free lambda Light chains at 1.0 mg/L
Kappa/lambda ratio 22.80
When the doc rechecked it this week, 1 month later, the results were:
Free kappa light chains at 29.7 mg/L
Free lambda light chains at 1.7 mg/L
Kappa/lambda ratio 17.47 mg/L.
No one has told me what this means, just that it looked better and they would recheck in 6 months. I have asked for a 2nd opinion on my symptoms due to the docs not knowing what to do here and trying to tell me that stress is causing the symptoms. I was not overly stressed at the time.
My question is this how high do the proteins need to be before they are concerned there is something going on?
Research pointed me here saying that healthy urine does not have Bence Jones proteins and that it takes a lot of build up before your urine secretes this.
Should I be concerned and want more tests to see if I have amyloidosis, multiple myeloma early, or something like this going on?
To me, the results don't look better, but I am new to all this.
Re: Looking for input on initial test results
As a generalization, abnormal urine free light chain levels alone, with normal serum free light chains, are very rarely associated with a disorder like myeloma or amyloidosis. Urine free light chains are difficult to interpret, and I actually almost never order them. I will order them as part of a 24 hour collection for people with known disease, but never as a screening test.
I cannot be more definitive about your situation -- your symptoms, etc. But if all the monoclonal gammopathy labs are negative aside from urine free light chain assay, I usually do not do much more in terms of hematologic investigation aside from retesting SERUM free light chains again in a few months to make sure they are not becoming abnormal.
Hope this helps and that you get some answers about why you are having symptoms.
I cannot be more definitive about your situation -- your symptoms, etc. But if all the monoclonal gammopathy labs are negative aside from urine free light chain assay, I usually do not do much more in terms of hematologic investigation aside from retesting SERUM free light chains again in a few months to make sure they are not becoming abnormal.
Hope this helps and that you get some answers about why you are having symptoms.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
7 posts
• Page 1 of 1