Hi all,
I was wondering if anyone on here could give me some advice and stop me from worrying after numerous visits to my doctor and tests.
Basically, I've had some rib/back pain over the last few months, which comes and goes. More recently, I've had pins and needles in my hands and feet that can last a few hours at a time.
But, what is worrying me most is foamy urine - I've had numerous dipstick tests and they've all come back negative, which is making me wonder if (after some searching on the internet) that it is in fact Bence Jones protein.
My blood tests have come back all clear, but I read somewhere that you can still get clear blood tests and have multiple myeloma - is that the case? Would I have foamy urine and normal blood results? Sorry to be graphic, but my urine is foamy every time that I go - even if there is just a little bit.
Also, finally, are eye floaters are symptoms? The reason I ask is because these started at the same time as the rest of my problems.
I'm only 26, so my doctor is not concerned like I am, but I do know that people have been diagnosed at my age.
I'm sorry to have gone on for so long, I'm just looking for any advice really.
Thanks,
Forums
6 posts
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Re: Very concerned I may have multiple myeloma
Hi Liam,
I can understand your concerns about possibly having myeloma. Have you been referred to a hematologist, who could interpret any test results? You might be tested for protein in the blood, the urine, and also more specific tests such serum free light chains (SFLC) and monoclonal tests for excess antibodies. I hope it is not myeloma, at your young age! But if it were to be, or smoldering myeloma, then it would be good to know and have it monitored. Please let us know about any future test results!
I did have eye floaters and bursts of color in my eyes before my diagnosis. An ophthalmologist did not know that I also had undiagnosed cancer at that time. There might have been some connection between that and the cancer. Thankfully, I don't have those eye problems now.
I can understand your concerns about possibly having myeloma. Have you been referred to a hematologist, who could interpret any test results? You might be tested for protein in the blood, the urine, and also more specific tests such serum free light chains (SFLC) and monoclonal tests for excess antibodies. I hope it is not myeloma, at your young age! But if it were to be, or smoldering myeloma, then it would be good to know and have it monitored. Please let us know about any future test results!
I did have eye floaters and bursts of color in my eyes before my diagnosis. An ophthalmologist did not know that I also had undiagnosed cancer at that time. There might have been some connection between that and the cancer. Thankfully, I don't have those eye problems now.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Very concerned I may have multiple myeloma
Hi Nancy,
Thank you very much for your reply, much appreciated.
Unfortunately, due to my age, my doctor does not seem concerned at all and is not referring me.
I understand he is the professional and knows much more than I do, but it doesn't stop the symptoms, nor the worry I'm having. I'm at a bit of a loss as to what to do next really.
Thank you very much for your reply, much appreciated.
Unfortunately, due to my age, my doctor does not seem concerned at all and is not referring me.
I understand he is the professional and knows much more than I do, but it doesn't stop the symptoms, nor the worry I'm having. I'm at a bit of a loss as to what to do next really.
Re: Very concerned I may have multiple myeloma
Hello Liam,
Sorry to hear about your concerns and the symptoms you've been experiencing.
As Nancy suggested, there are a few blood simple tests that can be done to determine rather conclusively whether or not you have multiple myeloma. They are not that expensive, so perhaps you can work with your doctor to have them arranged, or arrange for them privately, on your own, if your doctor won't arrange them for you. I don't know where you live, but if you are in the US, you can have the tests done on your own at any private lab testing service.
A serum immunofixation electrophoresis (IFE or IFX) will determine whether there is any monoclonal protein in your blood. It won't tell you how much, but it will tell you if any is present. The presence of a monoclonal protein is the key sign of either multiple myeloma or a disease similar to it.
A serum protein electrophoresis test (SPEP) will measure how much monoclonal protein is present and also give you measures of other protein levels.
Finally, a serum free light chain test is useful in those cases where the disease might be causing only light chains of immunoglobulins to be present, rather than heavy chains.
Other tests that can be useful are those that measure your blood cell counts, blood chemistry, and immunoglobulin (IgA, IgG, and IgM) levels. You will want to look in particular for signs of anemia (low hemoglobin), bone destruction (high calcium), and kidney damage (high creatinine levels).
Really, though, the IFE, SPEP, and serum free light chain tests are the key. If they don't show any signs of myeloma, then there is only about a 2-3 percent chance that the disease is present. That's when the other tests, particularly blood chemistry, become useful, and perhaps imaging as well, such as x-rays, MRIs, or PET/CTs.
The symptoms you described can be due to a lot of different things. At your age, it would indeed be very unusual for the symptoms to be due to multiple myeloma. But you and your doctor can quickly check for the disease with the tests that I just outlined.
Also, please understand that myeloma isn't a disease where subjective judgement of how severe certain symptoms are is the basis for the diagnosis. The diagnosis is based on clearly defined, quantitative criteria tied to the sorts of tests that I mention above.
The Wikipedia article on multiple myeloma, especially the diagnostic criteria section, will outline the diagnosis process, as will an update to the diagnostic criteria described in this article:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
Good luck!
Sorry to hear about your concerns and the symptoms you've been experiencing.
As Nancy suggested, there are a few blood simple tests that can be done to determine rather conclusively whether or not you have multiple myeloma. They are not that expensive, so perhaps you can work with your doctor to have them arranged, or arrange for them privately, on your own, if your doctor won't arrange them for you. I don't know where you live, but if you are in the US, you can have the tests done on your own at any private lab testing service.
A serum immunofixation electrophoresis (IFE or IFX) will determine whether there is any monoclonal protein in your blood. It won't tell you how much, but it will tell you if any is present. The presence of a monoclonal protein is the key sign of either multiple myeloma or a disease similar to it.
A serum protein electrophoresis test (SPEP) will measure how much monoclonal protein is present and also give you measures of other protein levels.
Finally, a serum free light chain test is useful in those cases where the disease might be causing only light chains of immunoglobulins to be present, rather than heavy chains.
Other tests that can be useful are those that measure your blood cell counts, blood chemistry, and immunoglobulin (IgA, IgG, and IgM) levels. You will want to look in particular for signs of anemia (low hemoglobin), bone destruction (high calcium), and kidney damage (high creatinine levels).
Really, though, the IFE, SPEP, and serum free light chain tests are the key. If they don't show any signs of myeloma, then there is only about a 2-3 percent chance that the disease is present. That's when the other tests, particularly blood chemistry, become useful, and perhaps imaging as well, such as x-rays, MRIs, or PET/CTs.
The symptoms you described can be due to a lot of different things. At your age, it would indeed be very unusual for the symptoms to be due to multiple myeloma. But you and your doctor can quickly check for the disease with the tests that I just outlined.
Also, please understand that myeloma isn't a disease where subjective judgement of how severe certain symptoms are is the basis for the diagnosis. The diagnosis is based on clearly defined, quantitative criteria tied to the sorts of tests that I mention above.
The Wikipedia article on multiple myeloma, especially the diagnostic criteria section, will outline the diagnosis process, as will an update to the diagnostic criteria described in this article:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
Good luck!
Re: Very concerned I may have multiple myeloma
I would insist that your doctor do some of the tests Cheryl G mentioned above. It is rare that younger people get myeloma. My daughter was only 32 when diagnosed. I actually think she had been seeing a doctor for almost a year before but, because of her age, she was not tested until it was clearly obvious there was something wrong. There are others on the Beacon who have been diagnosed young.
Good luck and I hope the tests turn out negative for myeloma
Good luck and I hope the tests turn out negative for myeloma
Re: Very concerned I may have multiple myeloma
Thanks all for your input, it really is much appreciated.
I've managed to get a couple of my blood test results out of my doctor - I was hoping they might mean more to people on here than they do to me - still trying to understand!!
IgG 8.56 g/L
IgA 2.5 g/L
IgM 0.99 g/L
Serum total protein level 72 g/L
Serum albumin level 48 g/L
Serum protein electrophoresis also showed "no gross abnormaility" and "no paraprotein visible on strip".
I also had a urine test, but only provided a small sample, which came back negative for Bence Jones - thinking I should ask for a 24 hour test though?
Sorry to bug you all, just hoping these results might mean something more to you than they do me? And hopefully ease my fears slightly!
Best Wishes,
I've managed to get a couple of my blood test results out of my doctor - I was hoping they might mean more to people on here than they do to me - still trying to understand!!
IgG 8.56 g/L
IgA 2.5 g/L
IgM 0.99 g/L
Serum total protein level 72 g/L
Serum albumin level 48 g/L
Serum protein electrophoresis also showed "no gross abnormaility" and "no paraprotein visible on strip".
I also had a urine test, but only provided a small sample, which came back negative for Bence Jones - thinking I should ask for a 24 hour test though?
Sorry to bug you all, just hoping these results might mean something more to you than they do me? And hopefully ease my fears slightly!
Best Wishes,
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