My wife has many of the symptoms of multiple myeloma, including back pain on her spine and ribs that began in December, and carpel tunnel that showed up out of the blue a few weeks ago.
But, so far, tests have not shown any signs of myeloma. Her back pain on spine began at the beginning of December. She had an x-ray at the end of December, and an MRI in March. Both came back normal.
Is it possible for her to have myeloma and have it not show up on any of these tests?
(I posted earlier this year about my wife's case in this forum thread.)
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Re: Myeloma diagnosis possible with negative x-rays, MRI?
Sadlerst,
MRIs and xrays are not really used by themselves to diagnose the presence of multiple myeloma. They are primarily used to see if there might be bone damage associated with multiple myeloma (which doesn't happen with all multiple myeloma patients). As Ian mentioned in his earlier reply to you, there are a series of pretty simple lab tests that can be done to check for multiple myeloma.
If you really insist on wanting to do lab test on your own and only want to do one test, I would agree with Jonah that an IFE might be the way to go. But rather than go through mail order, I would just google on a Quest Diagnostics or a Labcorp facility in your city and just get it done at one of their walk-in labs. With no insurance, an IFE costs about $200 at Quest. An SPEP costs about $60.
MRIs and xrays are not really used by themselves to diagnose the presence of multiple myeloma. They are primarily used to see if there might be bone damage associated with multiple myeloma (which doesn't happen with all multiple myeloma patients). As Ian mentioned in his earlier reply to you, there are a series of pretty simple lab tests that can be done to check for multiple myeloma.
- Immunoglobulin levels (IgG, IgA, IgM, etc.)
- Free light chain levels (based on the "Freelite" assay)
- Serum protein electrophoresis (SPEP)
- Serum immunofixation (serum IFE)
If you really insist on wanting to do lab test on your own and only want to do one test, I would agree with Jonah that an IFE might be the way to go. But rather than go through mail order, I would just google on a Quest Diagnostics or a Labcorp facility in your city and just get it done at one of their walk-in labs. With no insurance, an IFE costs about $200 at Quest. An SPEP costs about $60.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Myeloma diagnosis possible with negative x-rays, MRI?
Multibilly
I'm confused by the terms:
Serum protein electrophoresis (SPEP) vs. serum immunofixation (serum IFE)
I have never had the latter performed. To further confuse things for me, a couple of sites state that the IFE is also referred to as a UPEP. That just doesn't make sense to me. I've searched this site and others and just can't seem to clarify or resolve my confusion?
What the heck am I missing?
Aloha
Daniel
I'm confused by the terms:
Serum protein electrophoresis (SPEP) vs. serum immunofixation (serum IFE)
I have never had the latter performed. To further confuse things for me, a couple of sites state that the IFE is also referred to as a UPEP. That just doesn't make sense to me. I've searched this site and others and just can't seem to clarify or resolve my confusion?
What the heck am I missing?
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Myeloma diagnosis possible with negative x-rays, MRI?
Sadlerst,
X-ray and MRI are not tests one would use to initially diagnose myeloma. During my initial work up, nothing showed up on X-ray. It is my understanding that bone lesions will not be revealed on X-ray until there is at least 30% bone erosion. MRIs are usually not part of the diagnostic work up.
I would suggest you find an oncologist who is familiar with multiple myeloma and have the proper tests done for a proper diagnosis. Myeloma is rare and complicated and early detection is certainly in your favor.
All the best
X-ray and MRI are not tests one would use to initially diagnose myeloma. During my initial work up, nothing showed up on X-ray. It is my understanding that bone lesions will not be revealed on X-ray until there is at least 30% bone erosion. MRIs are usually not part of the diagnostic work up.
I would suggest you find an oncologist who is familiar with multiple myeloma and have the proper tests done for a proper diagnosis. Myeloma is rare and complicated and early detection is certainly in your favor.
All the best
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Myeloma diagnosis possible with negative x-rays, MRI?
Hello DanielR,
Protein electrophoresis (PEP) and immunofixation electrophoresis (IFE), whether serum or urine, are different tests.
A serum or urine protein electrophoresis tells you how big an M-spike you have. It does not tell you, however, what kind of M-spike you have -- for example, if it is IgG lambda, or IgA kappa, etc.
The immunofixation electrophoresis tells you whether you have an monoclonal protein present in the blood or urine, and what the type is, but it doesn't tell you how much is present.
Multibilly did a nice posting a while back that gives a summary of most of the key myeloma-related tests and what information they provide. You may find it helpful.
Hope this helps a bit.
Protein electrophoresis (PEP) and immunofixation electrophoresis (IFE), whether serum or urine, are different tests.
A serum or urine protein electrophoresis tells you how big an M-spike you have. It does not tell you, however, what kind of M-spike you have -- for example, if it is IgG lambda, or IgA kappa, etc.
The immunofixation electrophoresis tells you whether you have an monoclonal protein present in the blood or urine, and what the type is, but it doesn't tell you how much is present.
Multibilly did a nice posting a while back that gives a summary of most of the key myeloma-related tests and what information they provide. You may find it helpful.
Hope this helps a bit.
Re: Myeloma diagnosis possible with negative x-rays, MRI?
Thank you all for your responses. The information is overwhelming for us and we appreciate you taking the time to respond.
The information you have given us regarding x-rays and MRIs is completely opposite of what my wife's doctor is telling her. Her doctor claims that, if she had multiple myeloma something would have shown up on her x-ray or MRI.
We have HMO insurance with all the drawbacks that are associated with referrals and changing doctors. For example, it is already too late to change her primary care physician for April, which means the earliest she could have a new doctor would be May 1. In the meantime, as a family with children still at home, we do not have the financial resources to see specialists and have tests run out of pocket.
One thing that is very confusing to us at this point is: What is it that brings most multiple myeloma patients to the doctor in the first place. Is it bone pain or some other symptoms? Or was this incidentally caught in lab work? Did you come to the doctor with bone pain and they investigated immediately with myeloma lab work? What made your doctor pursue myeloma testing?
Thank you so much for your time.
The information you have given us regarding x-rays and MRIs is completely opposite of what my wife's doctor is telling her. Her doctor claims that, if she had multiple myeloma something would have shown up on her x-ray or MRI.
We have HMO insurance with all the drawbacks that are associated with referrals and changing doctors. For example, it is already too late to change her primary care physician for April, which means the earliest she could have a new doctor would be May 1. In the meantime, as a family with children still at home, we do not have the financial resources to see specialists and have tests run out of pocket.
One thing that is very confusing to us at this point is: What is it that brings most multiple myeloma patients to the doctor in the first place. Is it bone pain or some other symptoms? Or was this incidentally caught in lab work? Did you come to the doctor with bone pain and they investigated immediately with myeloma lab work? What made your doctor pursue myeloma testing?
Thank you so much for your time.
Re: Myeloma diagnosis possible with negative x-rays, MRI?
I read your post and the responses and wanted to add that I would start with an ordinary CBC (blood test) which I assume your HMO will approve. Look for low red and white blood cells, low hemoglobin, and especially low absolute neutrophils. Some or all of these will tell you if you need to see a hematologist / oncologist. The blood problems should also help in getting your HMO to sent you to the specialist - hopefully.
By the time your wife has bone lesions, the myeloma is advanced. The earlier you get diagnosed and started on chemo, the better the results. If she is diagnosed with myeloma, they will want to do more extensive testing and a bone marrow biopsy and get the M-spike, but one step at a time.
Good luck to you both. Keep in touch with how things go.
Monty
By the time your wife has bone lesions, the myeloma is advanced. The earlier you get diagnosed and started on chemo, the better the results. If she is diagnosed with myeloma, they will want to do more extensive testing and a bone marrow biopsy and get the M-spike, but one step at a time.
Good luck to you both. Keep in touch with how things go.
Monty
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monty - Name: monty
- Who do you know with myeloma?: self
- When were you/they diagnosed?: September 5, 2013
- Age at diagnosis: 69
Re: Myeloma diagnosis possible with negative x-rays, MRI?
Sadlerst,
The suggestion from Monty's post might be your best bet, and leads into answering your last question "what made your doctor pursue a myeloma diagnosis?"
Myeloma is often hard to diagnose since many doctors are not familiar with the disease, and often times the symptoms are thought to be caused by something else. Many patients present with bone fractures or anemia before a myeloma diagnosis is made.
I had the usual CBC done prior to my annual physical with my primary care physician. My white count, red count and hemoglobin were all in the normal range; however, he noticed that my total blood protein was a bit high. We ran the test again 60 days later, and my protein level was further elevated, again with normal red, white and hemoglobin values. He recommended I see an oncologist for further work up and diagnostics.
I had no signs or symptoms of myeloma, however SPEP and a bone marrow biopsy confirmed the diagnosis.
As Monty suggested, a CBC may be a wise start in deciding if further tests are necessary, and at the same time provide you with some piece of mind.
All the best.
The suggestion from Monty's post might be your best bet, and leads into answering your last question "what made your doctor pursue a myeloma diagnosis?"
Myeloma is often hard to diagnose since many doctors are not familiar with the disease, and often times the symptoms are thought to be caused by something else. Many patients present with bone fractures or anemia before a myeloma diagnosis is made.
I had the usual CBC done prior to my annual physical with my primary care physician. My white count, red count and hemoglobin were all in the normal range; however, he noticed that my total blood protein was a bit high. We ran the test again 60 days later, and my protein level was further elevated, again with normal red, white and hemoglobin values. He recommended I see an oncologist for further work up and diagnostics.
I had no signs or symptoms of myeloma, however SPEP and a bone marrow biopsy confirmed the diagnosis.
As Monty suggested, a CBC may be a wise start in deciding if further tests are necessary, and at the same time provide you with some piece of mind.
All the best.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Myeloma diagnosis possible with negative x-rays, MRI?
Sadlerst,
I'm with Monty and Dano on this. You are right that multiple myeloma is often diagnosed when something dramatic happens, like significant bone fractures or kidney failure. This can happen because the symptoms of the illness are not well known and can easily be missed by the person, the family, or even health care professionals and it progresses to a significant point.
My myeloma was first caught by my GP, who ordered a CBC (Complete Blood Count) because of my reports of fatigue. He saw that I was anemic, and we then began to try and figure out why that was the case. This led to other tests, eventually coming around to an iron deficiency and a referral to my hematologist. We infused me with iron to make sure that I had plenty of those stores, but the anemia did not go away. This led to more myeloma-specific testing that showed monoclonal proteins, and bone lesions that met the new criteria. I had no specific pains or trouble with my bones when we began to figure all of this out.
The main point I am trying to make is that, with something as simple as a CBC, you can begin to work with your healthcare providers to investigate the situation more thoroughly. You do not want to wait until the myeloma is to the point of kidney problems or bone fractures if you can avoid it; if it turns out that your wife does not have multiple myeloma, then you can breathe a sigh of relief and possibly look for another source of her pain. By catching mine fairly early, I am hopeful that I can return to fairly good functioning, especially with a hoped-for prolonged remission from my stem cell transplant (I'm in the hospital right now).
I wish you and your wife the best outcome.
I'm with Monty and Dano on this. You are right that multiple myeloma is often diagnosed when something dramatic happens, like significant bone fractures or kidney failure. This can happen because the symptoms of the illness are not well known and can easily be missed by the person, the family, or even health care professionals and it progresses to a significant point.
My myeloma was first caught by my GP, who ordered a CBC (Complete Blood Count) because of my reports of fatigue. He saw that I was anemic, and we then began to try and figure out why that was the case. This led to other tests, eventually coming around to an iron deficiency and a referral to my hematologist. We infused me with iron to make sure that I had plenty of those stores, but the anemia did not go away. This led to more myeloma-specific testing that showed monoclonal proteins, and bone lesions that met the new criteria. I had no specific pains or trouble with my bones when we began to figure all of this out.
The main point I am trying to make is that, with something as simple as a CBC, you can begin to work with your healthcare providers to investigate the situation more thoroughly. You do not want to wait until the myeloma is to the point of kidney problems or bone fractures if you can avoid it; if it turns out that your wife does not have multiple myeloma, then you can breathe a sigh of relief and possibly look for another source of her pain. By catching mine fairly early, I am hopeful that I can return to fairly good functioning, especially with a hoped-for prolonged remission from my stem cell transplant (I'm in the hospital right now).
I wish you and your wife the best outcome.
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dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
Re: Myeloma diagnosis possible with negative x-rays, MRI?
I like Monty's suggestion to get the CBC test done. Similar to Dano, when I was diagnosed, I had no significant myeloma symptoms other than some anemia and related fatigue. The CBC showed I had low red blood cell (RBC) levels, and very low iron, but nothing else out of the ordinary. My primary care physician tried to raise my iron levels, but when that had no affect, he immediately sent me to see a hematologist.
I might also recommend gathering a bit of data on myeloma and its symptoms, particularly that its symptoms include more than bone pain / lesions, and have it available the next time you see your doctor.
In particular, look up CRAB, which represents the four types of symptoms (elevated Calcium, Renal [kidney] failure, Anemia, and Bone lesions). Only one of these need be present to support a myeloma diagnosis.
I might also recommend gathering a bit of data on myeloma and its symptoms, particularly that its symptoms include more than bone pain / lesions, and have it available the next time you see your doctor.
In particular, look up CRAB, which represents the four types of symptoms (elevated Calcium, Renal [kidney] failure, Anemia, and Bone lesions). Only one of these need be present to support a myeloma diagnosis.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
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