I am new to all of this. I was seeing a neurologist who was trying to figure out why I have worsening neuropathy, and he did an SPEP and IFE test. This was in May. The results said a "possible monoclonal IgG Lambda", and "hypogammaglobulinemia". He immediately sent me to an oncologist. The oncologist redid the tests and added some. The results of the SPEP and IFE again said "possible monoclonal protein", and "hypogammaglobulinemia". He did a urine test, which came back negative for bence/jones. He also did an FLC test, and both kappa and lambda were abnormally low, and the ratio was abnormal low.
He said he wanted to redo the tests in 4 weeks. I did, and got the results today. The word "possible" is now gone, and it says I have a monoclonal IgG Lambda. My IgG, IgA, and IgM are all still low (and lower than last time). Here is a little more info about me....I have Lupus, and I have chronic kidney disease. Since my immunoglobulins were so low, I was sent to an immunologist. He feels I have a primary immune deficiency (probably CVID). We'll know for sure after results from vaccine tests in 2 weeks.
The test results today sounded like they couldn't get an M spike amount. It seems like from what I've read, if you have low IgG (like me), you have a low M spike.
So my questions are:
1. Is it true that a low IgG means a low M spike, and if so, is that an accurate depiction of the amount of the monoclonal protein or just a result of a low IgG?
2. What does it mean when someone has both a monoclonal IgG Lambda and hypogammaglobulinemia (possibly CVID)?
3. Since my case is pretty complicated and confusing....with the hypogammaglobulinemia (and possible CVID), Lupus, etc., should a bone marrow biopsy be the next step to determine what's really going on?
4. What are next steps, etc.?
Sorry for all of the text and questions, but I really want to figure this out and know what's going on. Any advice/info is appreciated!
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Re: Newbie Questions
Hi AustinLisa,
Certainly all of these tests can be confusing, especially when the results are not clear-cut, as in your case. To try to answer your questions:
1) Low IgG and low M-spike are not synonymous. It depends on the type of monoclonal protein you have. Some people have IgA myeloma with a very high M-spike and low IgG levels. In your case you appear to have a very low-level monoclonal gammopathy with a barely detectable IgG lambda protein, so they're not able to quantitate the amount of M-spike. Patients with autoimmune diseases like lupus have a higher rate of monoclonal gammopathies than the general population.
2) Patients with monoclonal gammopathies (either MGUS or myeloma) very commonly have suppression of their normal immunoglobulins (IgA, IgG, IgM) so they appear hypogammaglobulinemic. It doesn't necessarily mean they have CVID.
3) Yes given the confusion a bone marrow biopsy would be helpful to see if you have abnormal plasma cells and characterize them further.
4) The big question here is whether your worsening neuropathy is related to the IgG lambda monoclonal protein, or whether you have any other end-organ damage potentially related to the monoclonal gammopathy. Usually this entails checking blood counts, kidney function, calcium levels, xrays of the bones. Your neurologist may also want to do nerve conduction studies and/or EMG to characterize the neuropathy and see if it fits a pattern consistent with one of the monoclonal protein-associated neuropathies (such as amyloidosis, POEMS syndrome, or others). If it does, then further testing by your oncologist could be done to assess for these.
Discussing all these concerns and questions with your doctors would be the next steps going forward. Hope this is helpful. Good luck!
Certainly all of these tests can be confusing, especially when the results are not clear-cut, as in your case. To try to answer your questions:
1) Low IgG and low M-spike are not synonymous. It depends on the type of monoclonal protein you have. Some people have IgA myeloma with a very high M-spike and low IgG levels. In your case you appear to have a very low-level monoclonal gammopathy with a barely detectable IgG lambda protein, so they're not able to quantitate the amount of M-spike. Patients with autoimmune diseases like lupus have a higher rate of monoclonal gammopathies than the general population.
2) Patients with monoclonal gammopathies (either MGUS or myeloma) very commonly have suppression of their normal immunoglobulins (IgA, IgG, IgM) so they appear hypogammaglobulinemic. It doesn't necessarily mean they have CVID.
3) Yes given the confusion a bone marrow biopsy would be helpful to see if you have abnormal plasma cells and characterize them further.
4) The big question here is whether your worsening neuropathy is related to the IgG lambda monoclonal protein, or whether you have any other end-organ damage potentially related to the monoclonal gammopathy. Usually this entails checking blood counts, kidney function, calcium levels, xrays of the bones. Your neurologist may also want to do nerve conduction studies and/or EMG to characterize the neuropathy and see if it fits a pattern consistent with one of the monoclonal protein-associated neuropathies (such as amyloidosis, POEMS syndrome, or others). If it does, then further testing by your oncologist could be done to assess for these.
Discussing all these concerns and questions with your doctors would be the next steps going forward. Hope this is helpful. Good luck!
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Dr. Adam Cohen - Name: Adam D. Cohen, M.D.
Beacon Medical Advisor
Re: Newbie Questions
Thank you so much for these answers, Dr. Cohen! It sounds like a bone marrow biopsy would help clear up a bit of this big mess, and at least give me the peace of mind of knowing more. I do definitely have kidney disease...dx a year ago through kidney biopsy. I have 30% tubulointerstitial fibrosis, and a very small amount of glomerulonephritis. I am in Stage 2 chronic kidney disease, and right at the mark to cross into Stage 3. They could not determine what has caused the kidney damage (no active lupus nephritis).
I think you've given me the courage to push a little for the BMB (I think my oncologist wants to just repeat the tests again...but it's been 3 times in 3 months). My next question is....I live in Austin, Texas. My oncologist is here in Austin. I just saw my orthopedic surgeon (I had to have a bone and cartilage transplant in my knee this year due to a big piece of bone missing - he thought from possibly the lupus), and I filled him in on all of this. He felt that with all of my health problems, I should think about going to MD Anderson, since it's pretty close. With someone like me (who has Lupus, kidney disease, etc.), should I ask MD Anderson to do the BMB and X-rays to assess what's going on, or should I have my local oncologist do it and then see what the results say? I like my oncologist, but I know MD Anderson has access to much more....my best friend (34) died a year ago from cancer (also had autoimmune disease like me), and she only even knew she was dying from MD Anderson....my same oncology group didn't catch how much it had progressed.
Lastly, I get my definitive immune deficiency test results in about 2 weeks. Will that mean anything about this IgG Lambda if I do or do not have CVID?
Thank you so much!
Lisa
I think you've given me the courage to push a little for the BMB (I think my oncologist wants to just repeat the tests again...but it's been 3 times in 3 months). My next question is....I live in Austin, Texas. My oncologist is here in Austin. I just saw my orthopedic surgeon (I had to have a bone and cartilage transplant in my knee this year due to a big piece of bone missing - he thought from possibly the lupus), and I filled him in on all of this. He felt that with all of my health problems, I should think about going to MD Anderson, since it's pretty close. With someone like me (who has Lupus, kidney disease, etc.), should I ask MD Anderson to do the BMB and X-rays to assess what's going on, or should I have my local oncologist do it and then see what the results say? I like my oncologist, but I know MD Anderson has access to much more....my best friend (34) died a year ago from cancer (also had autoimmune disease like me), and she only even knew she was dying from MD Anderson....my same oncology group didn't catch how much it had progressed.
Lastly, I get my definitive immune deficiency test results in about 2 weeks. Will that mean anything about this IgG Lambda if I do or do not have CVID?
Thank you so much!
Lisa
Re: Newbie Questions
Lisa-
Since MD Anderson is close, I would suggest that you go there and have all of the tests done that you need to have done. If it turns out that you have multiple myeloma, it is important to have a specialist in multiple myeloma on your team. With all of your health issues, it is more important to be in a place where all of the specialists you may need are located.
Good luck in getting to the root of what is going on with you,
Nancy in Phila
Since MD Anderson is close, I would suggest that you go there and have all of the tests done that you need to have done. If it turns out that you have multiple myeloma, it is important to have a specialist in multiple myeloma on your team. With all of your health issues, it is more important to be in a place where all of the specialists you may need are located.
Good luck in getting to the root of what is going on with you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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