Hi to everyone,
I really don’t know where to start as I seem to have been having symptoms for a very long time, but despite many times at my local GP complaining, he just seemed to keep saying there is nothing wrong with you don’t worry.
However in March I went to see a doctor about a different issue which was a bad case of gout. He ran some tests and he came to me with a diagnosis on MGUS, which I had never heard of. He suggested that I go to see a kidney doctor, as the gout was not responding to medicine, and that I should have my regular doctor monitor the MGUS.
In the mean time, I went to see my regular doctor, and he said don’t worry. I think that this is all a lab mistake, and I put my mind at ease, but the kidney doctor ran some additional tests and informed me that due to other results, he thought I should see a specialist, as he thought that things were moving on to smoldering myeloma or maybe multiple myeloma.
The factors he was using were
M-spike 0.2 g/dL
Lambda light chain, serum 69.4
Kappa / lambda light chain free with ratio, serum 0.18
Calcium 10.5
He said that my kidneys were working fine and everything else seemed normal,
I will be seeing a specialist today, but obviously I’m very worried that I seem to have gone from don’t worry to complete panic in 3 weeks.
Thanks to everyone here. I have read just about every story on here, trying to learn about this disease, but I don’t seem any more informed than when I started.
Forums
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Daleman - Name: Mh
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 55
Re: Could it be multiple myeloma, not just MGUS?
Hi Daleman,
I was just wondering if you had gotten any answers since your original post. I was told in April 2018 that I have MGUS, I am also 55 with IgA lambda type. M-spike 0.6 g/dl. I have not had a bone marrow biopsy or skeletal survey (X-ray or MRI etc). My kappa/ lambda ratio is similar to yours at 0.17.
I do suffer I lot of bone/back pain, and also my left side hip has been painful for months now. I have blamed this on my scoliosis but am not now sure that is the cause.
Amarie
I was just wondering if you had gotten any answers since your original post. I was told in April 2018 that I have MGUS, I am also 55 with IgA lambda type. M-spike 0.6 g/dl. I have not had a bone marrow biopsy or skeletal survey (X-ray or MRI etc). My kappa/ lambda ratio is similar to yours at 0.17.
I do suffer I lot of bone/back pain, and also my left side hip has been painful for months now. I have blamed this on my scoliosis but am not now sure that is the cause.
Amarie
Re: Could it be multiple myeloma, not just MGUS?
Amaris,
With your bone pain, I really think you should get some sort of scan. MRI or CT would be best, in my opinion, but even an X-ray of the painful area might show something. Myeloma is much easier to treat early, and much harder after there is a lot of bone damage.
Good luck to you,
David
With your bone pain, I really think you should get some sort of scan. MRI or CT would be best, in my opinion, but even an X-ray of the painful area might show something. Myeloma is much easier to treat early, and much harder after there is a lot of bone damage.
Good luck to you,
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Could it be multiple myeloma, not just MGUS?
Thank you David,
On my first visit with my haematologist in May, I told him about my back and hip pain and asked if I should have an MRI and he almost scoffed at the suggestion. I think it was because of my M-spike being low. (My urine test also showed a 'trace' of Bence Jones, although it was from one sample not a 24-hour collection.) I asked him how I would know if it was scoliosis pain or myeloma starting and he said, "That’s the trouble with having two pathologies “
He did another round of blood tests in August (I didn't see the same person this time; this one was working under the previous consultant) which is when it showed abnormal low kappa-lambda ratio. 0.17. I think this, being IgA type and having the pain that I feel, is what worries me. I can’t be sure it is scoliosis causing back pain and that plays on my mind.
I remember first haematologist saying my M-spike needing to be nearer 30 when it was only 6, but it seems to me from looking online that IgA lambda type doesn’t always secrete M-protein. Maybe I haven’t understood that properly.
I’m not due another appointment until January 2019.
I do see an osteopath in a couple of weeks so will ask him if he could refer me for an MRI.
On my first visit with my haematologist in May, I told him about my back and hip pain and asked if I should have an MRI and he almost scoffed at the suggestion. I think it was because of my M-spike being low. (My urine test also showed a 'trace' of Bence Jones, although it was from one sample not a 24-hour collection.) I asked him how I would know if it was scoliosis pain or myeloma starting and he said, "That’s the trouble with having two pathologies “
He did another round of blood tests in August (I didn't see the same person this time; this one was working under the previous consultant) which is when it showed abnormal low kappa-lambda ratio. 0.17. I think this, being IgA type and having the pain that I feel, is what worries me. I can’t be sure it is scoliosis causing back pain and that plays on my mind.
I remember first haematologist saying my M-spike needing to be nearer 30 when it was only 6, but it seems to me from looking online that IgA lambda type doesn’t always secrete M-protein. Maybe I haven’t understood that properly.
I’m not due another appointment until January 2019.
I do see an osteopath in a couple of weeks so will ask him if he could refer me for an MRI.
Re: Could it be multiple myeloma, not just MGUS?
Hello Amarie,
Regarding what your statement that "IgA lambda type doesn’t always secrete M-protein": This is most likely a misinterpretation of what you may have read here or elsewhere.
IgA M-spikes typically are not as accurately measured as IgG M-spikes. There is more variability. If a patient with IgA MGUS experiences a change in their M-spike from 0.3 to 0.7 g/dl (3 to 7 g/l), for example, a doctor may be more inclined to question whether this is a real change in the patient's disease than if the patient had IgG MGUS.
There is no evidence that we're aware of, however, that suggests that IgA M-spikes consistently underestimate how much monoclonal protein is actually in a patient's blood. There are more random, meaningless fluctuations in IgA M-spikes, but the fluctuations are not consistently on the low side of the actual M-spike a patient has.
To help assess whether a change in an IgA patient's M-spike is "real" or just random fluctuation, doctors often look at what has happened with the patient's total IgA level, which is reported in the quantitative immunoglobulin report, typically together with the patient's IgG and IgM level. If a patient's overall IgA level also has gone up at the same time their M-spike has gone up, this increases the chances the M-spike truly has gone up. This is because a patient's total IgA level is made up of two parts: their normal IgA, and their monoclonal IgA. And the monoclonal IgA is nothing other than the M-spike.
There is a test, known as the HevyLite assay, which can specifically measure how much IgA lambda, IgA kappa, IgG lambda, and so on are in a person's blood. It is considered by some researchers to be a more accurate way to track the levels of these proteins in the blood.
However, the Hevylite assay only reports total IgA lambda, IgA kappa, and the like. It does not report separately, for example, the level of a patient's normal IgA lambda and their monoclonal IgA lambda.
The Heylite assay also is a proprietary test made only by a single company, and it's our admittedly anecdotal impression that the assay mainly is used and advocated by specialists or treatment centers that have received research support from the test's manufacturer. Indeed, there's at least one report here in the forum from a patient whose doctor tried the Hevylite assay and found it did not help much with the tracking of IgA disease.
Regarding what your statement that "IgA lambda type doesn’t always secrete M-protein": This is most likely a misinterpretation of what you may have read here or elsewhere.
IgA M-spikes typically are not as accurately measured as IgG M-spikes. There is more variability. If a patient with IgA MGUS experiences a change in their M-spike from 0.3 to 0.7 g/dl (3 to 7 g/l), for example, a doctor may be more inclined to question whether this is a real change in the patient's disease than if the patient had IgG MGUS.
There is no evidence that we're aware of, however, that suggests that IgA M-spikes consistently underestimate how much monoclonal protein is actually in a patient's blood. There are more random, meaningless fluctuations in IgA M-spikes, but the fluctuations are not consistently on the low side of the actual M-spike a patient has.
To help assess whether a change in an IgA patient's M-spike is "real" or just random fluctuation, doctors often look at what has happened with the patient's total IgA level, which is reported in the quantitative immunoglobulin report, typically together with the patient's IgG and IgM level. If a patient's overall IgA level also has gone up at the same time their M-spike has gone up, this increases the chances the M-spike truly has gone up. This is because a patient's total IgA level is made up of two parts: their normal IgA, and their monoclonal IgA. And the monoclonal IgA is nothing other than the M-spike.
There is a test, known as the HevyLite assay, which can specifically measure how much IgA lambda, IgA kappa, IgG lambda, and so on are in a person's blood. It is considered by some researchers to be a more accurate way to track the levels of these proteins in the blood.
However, the Hevylite assay only reports total IgA lambda, IgA kappa, and the like. It does not report separately, for example, the level of a patient's normal IgA lambda and their monoclonal IgA lambda.
The Heylite assay also is a proprietary test made only by a single company, and it's our admittedly anecdotal impression that the assay mainly is used and advocated by specialists or treatment centers that have received research support from the test's manufacturer. Indeed, there's at least one report here in the forum from a patient whose doctor tried the Hevylite assay and found it did not help much with the tracking of IgA disease.
Re: Could it be multiple myeloma, not just MGUS?
Thank you for explaining. I like to try and understand all the facts (though some goes over my head 
) Ultimately I will just have to trust my haematologist.
) Ultimately I will just have to trust my haematologist.Re: Could it be multiple myeloma, not just MGUS?
If it were me, I'd be seriously thinking about a PET/CT scan to look for active lesions as the only way to distinguish definitely between the "two pathologies." You can't just decide to treat "by the numbers".
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
Re: Could it be multiple myeloma, not just MGUS?
That’s what I would like to happen as,then I would know. Thank you so much for taking the time to answer. Really appreciate it. I’ll let you know if I get anywhere with requesting MRI through my osteopath.
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