A few days ago I was told that I have MGUS. Previously I had never heard of this. The doctor who diagnosed it, a rheumatologist, was doing a very thorough work up to try to explain a recent incident I had. It doesn't seem clear that this incident was related to the MGUS diagnosis.
I am quite freaked out by this information and its relation to multiple myeloma. So far I understand very little about it. I do know that in 2014 my blood work apparently also showed that I had MGUS then.
The doctor did literally a couple dozen blood tests, perhaps more, not all of them related to this situation. A few days ago he had blood drawn to repeat 2 of the tests in order to see if the MGUS situation had changed or progressed. I don't understand these tests so I'm going to put the names of the tests and the initial results in this post. I hoping someone can explain them to me. Also perhaps tell me what to look for in the repeat tests. I am really terrified that they are going to show progression. I'm not sure how to calm down about this.
The 2 tests that were repeated are theses: ALT/SGPT and also AST/SGOT.
The results of the ALT/SGPT are a value of 49 where the normal range is 0 - 55.
The results of the AST/SGOT are a value 23 with a normal range of 5 -34.
I am going to give you the of a couple other tests. There is a Serum Immunofixation test where the only result given is monoclonal IgG, kappa.
Also there is a protein test where the total protein value is 5.7 with the range being 6.4 to 8.3.
This test also has some other results for albumin, alpha, and beta. If those results would be useful I can provide them.
I am really glad that I found this forum. It has been useful already.
Thanks to you all, Maggie77
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Re: Newly diagnosed with MGUS - lots of questions
Hi Maggie,
Here are a few things to consider:
a/ MGUS is a benign condition.
b/ YES most myeloma cases started out with an MGUS but NO not all MGUS develop to myeloma. Far from it! On average, the progression "rate" is about 1% per year from the year of diagnosis. This means in 20 years from now you "may have" 20% chance to progress, and 80% chance not to!
c/ The immunofixation tells you if you have the most common type of MGUS (the one that secretes a protein). It does not tell you how much though. In your case you are IgG kappa, the most common type of MGUS.
d/ The Serum Protein Electrophoresis test will tell you how much "bad" igG you make. This test should have a line (or a couple) titled "paraprotein or m-protein". This is how much bad protein (bad means it's useless to your body but you are producing it: hence the MGUS) you are producing. Can you share the number with us? It may be given as a % also. In any case, if you subtract (or multiply if in %) this number from the total IgG you get how much normal igG and how much bad igG you have. We can help you with this if you share the number.
e/ Another important test if the serum free light chain test (SFLC or FLC). This test will look at how much of the components of the bad protein you are making. In your case the important value is the Kappa value. This value gets divided by the other component: lambda, and provides a ratio which doctors use to evaluate "progression". In general the ratio must be > 100 (and kappa > 100) to be of concern. An abnormal ratio is not necessarily synonym with guaranteed progression as this test is very sensitive and values will usually vary quite a bit.
This is a quick 101 on MGUS. We'll explain some more if you post more of the data. AST and ALT are good liver markers but I am not aware of any use in the case of MGUS/SMM/multiple myeloma. May be others on the forum are?
Cheers and welcome!
Here are a few things to consider:
a/ MGUS is a benign condition.
b/ YES most myeloma cases started out with an MGUS but NO not all MGUS develop to myeloma. Far from it! On average, the progression "rate" is about 1% per year from the year of diagnosis. This means in 20 years from now you "may have" 20% chance to progress, and 80% chance not to!
c/ The immunofixation tells you if you have the most common type of MGUS (the one that secretes a protein). It does not tell you how much though. In your case you are IgG kappa, the most common type of MGUS.
d/ The Serum Protein Electrophoresis test will tell you how much "bad" igG you make. This test should have a line (or a couple) titled "paraprotein or m-protein". This is how much bad protein (bad means it's useless to your body but you are producing it: hence the MGUS) you are producing. Can you share the number with us? It may be given as a % also. In any case, if you subtract (or multiply if in %) this number from the total IgG you get how much normal igG and how much bad igG you have. We can help you with this if you share the number.
e/ Another important test if the serum free light chain test (SFLC or FLC). This test will look at how much of the components of the bad protein you are making. In your case the important value is the Kappa value. This value gets divided by the other component: lambda, and provides a ratio which doctors use to evaluate "progression". In general the ratio must be > 100 (and kappa > 100) to be of concern. An abnormal ratio is not necessarily synonym with guaranteed progression as this test is very sensitive and values will usually vary quite a bit.
This is a quick 101 on MGUS. We'll explain some more if you post more of the data. AST and ALT are good liver markers but I am not aware of any use in the case of MGUS/SMM/multiple myeloma. May be others on the forum are?
Cheers and welcome!
-
Cedb
Re: Newly diagnosed with MGUS - lots of questions
Thank you so much for taking the time to reply and to help me begin to understand this. I was unable to match any of the blood tests I had to the ones you mentioned as being useful. I am going to list all the blood tests done by this doctor hoping that one of these turns out to be one of the ones you mentioned, only perhaps labeled differently.
I maybe should explain that this doctor was trying to find a possible reason or cause for a recent health situation that I experienced. That is why he did such a variety of tests. In the situation I'm referring to I had a fever of 106.5 degrees and became unconscious for a little while. The doctors have been unable to identify the reason for this incident. After a short hospitalization I recovered.
During a hospitalization about 20 months ago apparently it was determined that I had MGUS. I don't know how long previous to that I have had this condition. One thing I wonder about is this - I have read that sometimes MGUS causes neuropathy. I have neuropathy and the cause of this has never been determined. If it is the case that MGUS caused the neuropathy it would mean that I've had the MGUS for quite a while. My guess is that it would be hard to determine whether the neuropathy was caused by MGUS. In any case, is the length of time the condition has existed relevant to how serious it is?
I am really glad that this forum exists. It is helpful to read about people who share the diagnosis but are in very diverse situations beyond that. Did most of you find that after a while you could quit worrying about what the future will bring, as far as this situation, or at least be a lot less concerned about it?
I will list the many blood tests that were done and if the results of any of them would be useful in understanding my MGUS situation I will post the results. I'm sure that many of them are unrelated .
Here they are:
Protein, Urine; C Reactive Protein; CBC with Differential; AST/SGOT; ALT/SGPT; Immunoglobulin A, and G and M; Protein, Urine;
Urinalysis with Microscopy and Culture if >5 WBC/HPF; Protein Electrophoresis, Reflex to IFIX; Protein, total; SSB(La)Ab; SSA(Ro)Ab; CK, total; Albumin; Cardiolipin Ab, IgG/IgM;
Akaline Phosphate; ESR;
That's it. Hope that some among all of these will be useful.
Again, thank you all for being there, Maggie77
I maybe should explain that this doctor was trying to find a possible reason or cause for a recent health situation that I experienced. That is why he did such a variety of tests. In the situation I'm referring to I had a fever of 106.5 degrees and became unconscious for a little while. The doctors have been unable to identify the reason for this incident. After a short hospitalization I recovered.
During a hospitalization about 20 months ago apparently it was determined that I had MGUS. I don't know how long previous to that I have had this condition. One thing I wonder about is this - I have read that sometimes MGUS causes neuropathy. I have neuropathy and the cause of this has never been determined. If it is the case that MGUS caused the neuropathy it would mean that I've had the MGUS for quite a while. My guess is that it would be hard to determine whether the neuropathy was caused by MGUS. In any case, is the length of time the condition has existed relevant to how serious it is?
I am really glad that this forum exists. It is helpful to read about people who share the diagnosis but are in very diverse situations beyond that. Did most of you find that after a while you could quit worrying about what the future will bring, as far as this situation, or at least be a lot less concerned about it?
I will list the many blood tests that were done and if the results of any of them would be useful in understanding my MGUS situation I will post the results. I'm sure that many of them are unrelated .
Here they are:
Protein, Urine; C Reactive Protein; CBC with Differential; AST/SGOT; ALT/SGPT; Immunoglobulin A, and G and M; Protein, Urine;
Urinalysis with Microscopy and Culture if >5 WBC/HPF; Protein Electrophoresis, Reflex to IFIX; Protein, total; SSB(La)Ab; SSA(Ro)Ab; CK, total; Albumin; Cardiolipin Ab, IgG/IgM;
Akaline Phosphate; ESR;
That's it. Hope that some among all of these will be useful.
Again, thank you all for being there, Maggie77
Re: Newly diagnosed with MGUS - lots of questions
Hi Maggie,
Protein electrophoresis is the serum protein electrophoresis I mentioned. Immunoglobulin levels for IgG, IgA and IgM may also help understand your case. Protein urine may be helpful depending on findings or lack thereof.
In the CBC, red blood cell count and hemoglobin levels help check if there is any sign of unexplained anemia, which is a key factor in myeloma (if the anemia cannot be explained by other reasons ...).
C-reactive protein levels and ESR are also sometimes looked at, but most often for stages beyond MGUS.
Cheers.
Protein electrophoresis is the serum protein electrophoresis I mentioned. Immunoglobulin levels for IgG, IgA and IgM may also help understand your case. Protein urine may be helpful depending on findings or lack thereof.
In the CBC, red blood cell count and hemoglobin levels help check if there is any sign of unexplained anemia, which is a key factor in myeloma (if the anemia cannot be explained by other reasons ...).
C-reactive protein levels and ESR are also sometimes looked at, but most often for stages beyond MGUS.
Cheers.
-
Cedb
Re: Newly diagnosed with MGUS - lots of questions
Hello Again,
It’s taken me a longer time than I wished to respond with the blood tests results you listed. Before I go any further I want to thank you again for your help.
In the meantime, I contacted a hematologist who I saw about 20 months ago because at that time I had she serious anemia. I asked if I could consult with him about this new situation. I live in Madison, WI and he is a doctor at the University of Wisconsin and the Carbone Cancer Center.
Anyway he called me promptly and what he had to say was somewhat reassuring. I had become worried that maybe I already had multiple myeloma and possibly had it for quite a while. He told me that I had a bone marrow biopsy in January 2014 to rule out multiple myeloma and also had body scans. I didn't remember the bone marrow test which seems strange but I guess in part that was because I had general anesthesia and also because I was pretty sick at that time. He said that I did not have multiple myeloma at that time nor anything of concern on my scans. He also said that he had looked at my recent blood test results and that none of them indicated that I had developed multiple myeloma since then. He did say that I am somewhat anemic but apparently wasn’t too concerned about this.
When I saw this doctor 20 months ago I had much more severe anemia. I had a couple blood transfusions and was then treated with high dose prednisone which returned my red blood count to a normal level. It stayed at that level when the high dose treatment was discontinued, although now it has slipped a little.
He said I did have MGUS and because of the monoclonal band I should be followed up every six months. He said he would be glad to do this unless my primary doctor wants to. I plan to tell my doctor that I want the hematologist to follow me. I feel comfortable with this hematologist / oncologist who I saw previously. I was impressed that he called me the same day that I sent him my email message and that he had already taken the time to look up my records.
I am going to include the test results that you mentioned in case you can give me additional information.
On the Protein Electropheresis Test the results were:
Test My Value Normal Range
Total protein 5.7 6.4-8.3
Albumin 4.06 3.86-6.04
Alpha 1 0.18 0.06-0.22
Alpha 2 0.56 0.46-0.98
Beta 0.56 0.50-1.23
Gamma 0.34 0.40-1.28
A/G ratio 2.47 1.62-2.72
Immunofixation Electropheresis showed Monoclonal IgG Kappa
The Immunofixation done with urine showed no band
Immuglobulin M is 25 mg/dL normal range: 33-293 mg/dL
Immuglobulin G is 635 mg/dL normal range: 552-1631 mg/dL
Immuglobulin A is 191 mg/dL normal range: 69-517 mg/dL
My red blood count and hemoglobin have both been low since 6 weeks ago when I became ill with an unexplained very high fever (106.5) and was hospitalized for a few days. Currently they are returning to normal I believe, but are still a little low. Currently my red blood count is 3.5 with a normal range 0f 3.8 to 5.2. My hemoglobin is currently 10.8 with a normal range of 11.6 to 15.6.
Can you tell me what the immunoglobin M, G, and A are about?
Also what is the meaning of having a monoclonal band?
I am still getting used to this. I had a close friend die last year from multiple myeloma and was very involved during her illness. Her illness was pretty advanced when she was diagnosed and she had a pretty awful experience. She was pretty young and was diagnosed while she was pregnant. So that has me scared. As I’ve had other uncertainties about my health in the last few years I’ve usually been able to quiet my worry and anxiety after a short while, however I’m having difficulty doing so with this.
I have neuropathy and I have read that MGUS can cause neuropathy. I’m hoping this is not the case with me because I’ve had it for quite a while - maybe 15 years - so that would mean I’ve had MGUS that long also which seems like it would be a risk factor.
I’ve probably include more lab results than are necessary but I don’t know much about what is most significant.
I will continue to read this forum and hopefully find suggestions on becoming less worried. Thanks again for your help.
Maggie77
It’s taken me a longer time than I wished to respond with the blood tests results you listed. Before I go any further I want to thank you again for your help.
In the meantime, I contacted a hematologist who I saw about 20 months ago because at that time I had she serious anemia. I asked if I could consult with him about this new situation. I live in Madison, WI and he is a doctor at the University of Wisconsin and the Carbone Cancer Center.
Anyway he called me promptly and what he had to say was somewhat reassuring. I had become worried that maybe I already had multiple myeloma and possibly had it for quite a while. He told me that I had a bone marrow biopsy in January 2014 to rule out multiple myeloma and also had body scans. I didn't remember the bone marrow test which seems strange but I guess in part that was because I had general anesthesia and also because I was pretty sick at that time. He said that I did not have multiple myeloma at that time nor anything of concern on my scans. He also said that he had looked at my recent blood test results and that none of them indicated that I had developed multiple myeloma since then. He did say that I am somewhat anemic but apparently wasn’t too concerned about this.
When I saw this doctor 20 months ago I had much more severe anemia. I had a couple blood transfusions and was then treated with high dose prednisone which returned my red blood count to a normal level. It stayed at that level when the high dose treatment was discontinued, although now it has slipped a little.
He said I did have MGUS and because of the monoclonal band I should be followed up every six months. He said he would be glad to do this unless my primary doctor wants to. I plan to tell my doctor that I want the hematologist to follow me. I feel comfortable with this hematologist / oncologist who I saw previously. I was impressed that he called me the same day that I sent him my email message and that he had already taken the time to look up my records.
I am going to include the test results that you mentioned in case you can give me additional information.
On the Protein Electropheresis Test the results were:
Test My Value Normal Range
Total protein 5.7 6.4-8.3
Albumin 4.06 3.86-6.04
Alpha 1 0.18 0.06-0.22
Alpha 2 0.56 0.46-0.98
Beta 0.56 0.50-1.23
Gamma 0.34 0.40-1.28
A/G ratio 2.47 1.62-2.72
Immunofixation Electropheresis showed Monoclonal IgG Kappa
The Immunofixation done with urine showed no band
Immuglobulin M is 25 mg/dL normal range: 33-293 mg/dL
Immuglobulin G is 635 mg/dL normal range: 552-1631 mg/dL
Immuglobulin A is 191 mg/dL normal range: 69-517 mg/dL
My red blood count and hemoglobin have both been low since 6 weeks ago when I became ill with an unexplained very high fever (106.5) and was hospitalized for a few days. Currently they are returning to normal I believe, but are still a little low. Currently my red blood count is 3.5 with a normal range 0f 3.8 to 5.2. My hemoglobin is currently 10.8 with a normal range of 11.6 to 15.6.
Can you tell me what the immunoglobin M, G, and A are about?
Also what is the meaning of having a monoclonal band?
I am still getting used to this. I had a close friend die last year from multiple myeloma and was very involved during her illness. Her illness was pretty advanced when she was diagnosed and she had a pretty awful experience. She was pretty young and was diagnosed while she was pregnant. So that has me scared. As I’ve had other uncertainties about my health in the last few years I’ve usually been able to quiet my worry and anxiety after a short while, however I’m having difficulty doing so with this.
I have neuropathy and I have read that MGUS can cause neuropathy. I’m hoping this is not the case with me because I’ve had it for quite a while - maybe 15 years - so that would mean I’ve had MGUS that long also which seems like it would be a risk factor.
I’ve probably include more lab results than are necessary but I don’t know much about what is most significant.
I will continue to read this forum and hopefully find suggestions on becoming less worried. Thanks again for your help.
Maggie77
Re: Newly diagnosed with MGUS - lots of questions
Maggie,
Sorry you need to be, but I'm glad you found us. The spectrum of MGUS, smoldering myeloma, and active myeloma is not easy to understand. It's takes everyone a while to learn the terminology and the common patterns, and the specifics for yourself. So don't let that add to your worries right now - you'll get there.
ALT/SGPT are liver tests - commonly known as liver markers, or liver enzymes. They are not all specific to myeloma. ALT/SGPT might be ordered for thousands of different reasons by almost every kind of doctor. Myeloma can cause liver disease, but only very very rarely. However, it is quite common for lots of different medications to cause a rise in liver markers, as well as about a thousand other medical problems. In any case, yours are normal. Anyway technically the abnormal range starts art 55 or 34, but we see values up in the hundreds, so values just a little bit above the normal range warrant attention and following, but not freaking out.
Could the liver tests your doctor ordered by related to the recent incident you had?
The serum or urine immunofixation is one of the key tests looking for myeloma. It is usually paired with serum or urine electophoresis. These tests are known as SPEP and UPEP, and are key to diagnosing anything on this (myeloma) plasma cell disorder spectrum.
The finding of a monoclonal band on the immunofixation is indeed indicative of a problem - MGUS or something else.
There are several other test that would need to be done. Do you have a referral to an heme/onc doctor to finish the investigation?
Good luck!
Tracy
Sorry you need to be, but I'm glad you found us. The spectrum of MGUS, smoldering myeloma, and active myeloma is not easy to understand. It's takes everyone a while to learn the terminology and the common patterns, and the specifics for yourself. So don't let that add to your worries right now - you'll get there.
ALT/SGPT are liver tests - commonly known as liver markers, or liver enzymes. They are not all specific to myeloma. ALT/SGPT might be ordered for thousands of different reasons by almost every kind of doctor. Myeloma can cause liver disease, but only very very rarely. However, it is quite common for lots of different medications to cause a rise in liver markers, as well as about a thousand other medical problems. In any case, yours are normal. Anyway technically the abnormal range starts art 55 or 34, but we see values up in the hundreds, so values just a little bit above the normal range warrant attention and following, but not freaking out.
Could the liver tests your doctor ordered by related to the recent incident you had?
The serum or urine immunofixation is one of the key tests looking for myeloma. It is usually paired with serum or urine electophoresis. These tests are known as SPEP and UPEP, and are key to diagnosing anything on this (myeloma) plasma cell disorder spectrum.
The finding of a monoclonal band on the immunofixation is indeed indicative of a problem - MGUS or something else.
There are several other test that would need to be done. Do you have a referral to an heme/onc doctor to finish the investigation?
Good luck!
Tracy
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
6 posts
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