My neurologist who I've been seeing for sensory disturbance has now ruled out any type of neurology problems. However, he ran a protein electrophoresis with immunofixation which came back with only one issue of
"Normal appearing SPEP pattern. IFE shows a very faint band in IgA kappa suggestive of a specific immune response or an early monoclonal protein."
He re-ran the test a few months later and we received the same results. He gave me no information about what this means and said we will retest it again in 6 months. If it changes, he will refer me to a hematologist.
I've been doing my best to research this but could use advice as to if this is considered a MGUS, or if I should push for a referral to a hematologist now or just wait, or if having a normal SPEP pattern answers these questions.
Any advice would be greatly appreciated.
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Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
Hi NotSamantha,
Do you mind sharing what kind of sensory disturbance you are experiencing that sent you to the neurologist in the first place? Are you experiencing any tingling or numbness in any of your extremities (peripheral neuropathy)?
Assuming for the moment that you have no peripheral neuropathy or other symptoms associated with a plasma cell disorder, there are a couple of other tests that one would want to run to help rule out something like MGUS. This would include a serum free light chain test and a quantified immunoglbouin (IgG, IgA, IgM) test. I would also go back and look at your hemoglobin, calcium and creatinine levels from your CBC and metabolic panel tests and make sure that they are all in range and report back to us on their levels.
I'm not a doc and others on the forum may have different opinions, but it seems reasonable to me to wait 6 months until your next visit to get re-tested in your particular situation. You could ask your neurologist to also run the other aforementioned tests at that time or you could wait until you see the hematologist to also run these tests (provided you have the same IFE findings again).
But if it will drive you nuts waiting another 6 months and it isn't too hard to get an appointment with a specialist via your insurance, I might push for an appointment with a hematologist now just to put the suspicion of MGUS to rest sooner rather than later.
If you let us know what city you are in, folks on this forum can recommend some good multiple myeloma specialists in your area that can quickly sort out these findings.
Do you mind sharing what kind of sensory disturbance you are experiencing that sent you to the neurologist in the first place? Are you experiencing any tingling or numbness in any of your extremities (peripheral neuropathy)?
Assuming for the moment that you have no peripheral neuropathy or other symptoms associated with a plasma cell disorder, there are a couple of other tests that one would want to run to help rule out something like MGUS. This would include a serum free light chain test and a quantified immunoglbouin (IgG, IgA, IgM) test. I would also go back and look at your hemoglobin, calcium and creatinine levels from your CBC and metabolic panel tests and make sure that they are all in range and report back to us on their levels.
I'm not a doc and others on the forum may have different opinions, but it seems reasonable to me to wait 6 months until your next visit to get re-tested in your particular situation. You could ask your neurologist to also run the other aforementioned tests at that time or you could wait until you see the hematologist to also run these tests (provided you have the same IFE findings again).
But if it will drive you nuts waiting another 6 months and it isn't too hard to get an appointment with a specialist via your insurance, I might push for an appointment with a hematologist now just to put the suspicion of MGUS to rest sooner rather than later.
If you let us know what city you are in, folks on this forum can recommend some good multiple myeloma specialists in your area that can quickly sort out these findings.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
Thanks for your reply Multibilly.
Immunoglobulin G 1180
Immunoglobulin A 124
Immunoglobulin M 86
My last CBC and metabolic panel were perfectly normal, but a few years back I was slightly anemic from very low iron levels, we ended up doing iron infusions and since then CBC's have been normal.
Sensory disturbance is pins and needles and burning sensation in one foot and lower back. The neurologist ran all his tests and found nothing.
Other helpful info, I did previously see a hematologist for a possibly bleeding or clotting disorder (this was before the iron deficiency was discovered). They ran extensive tests to find nothing abnormal. This all started after a miscarriage where I lost half my blood (7.1 hemoglobin), no transfusion done, this was 4 years ago, I took iron supplements for a year after this but always felt like crap. 2 years later my doc retired and another doc discovered the iron deficiency. Unsure if the pregnancy / miscarriage was the source of iron deficiency, but I suspect based on my eerily vampire like complexion prior to this, that the iron deficiency has been around a lot longer than 4 years.
So of the tests you mentioned I think that just leaves serum free light chain test? Also, what's your thought on the pins and needles?
Immunoglobulin G 1180
Immunoglobulin A 124
Immunoglobulin M 86
My last CBC and metabolic panel were perfectly normal, but a few years back I was slightly anemic from very low iron levels, we ended up doing iron infusions and since then CBC's have been normal.
Sensory disturbance is pins and needles and burning sensation in one foot and lower back. The neurologist ran all his tests and found nothing.
Other helpful info, I did previously see a hematologist for a possibly bleeding or clotting disorder (this was before the iron deficiency was discovered). They ran extensive tests to find nothing abnormal. This all started after a miscarriage where I lost half my blood (7.1 hemoglobin), no transfusion done, this was 4 years ago, I took iron supplements for a year after this but always felt like crap. 2 years later my doc retired and another doc discovered the iron deficiency. Unsure if the pregnancy / miscarriage was the source of iron deficiency, but I suspect based on my eerily vampire like complexion prior to this, that the iron deficiency has been around a lot longer than 4 years.
So of the tests you mentioned I think that just leaves serum free light chain test? Also, what's your thought on the pins and needles?
Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
Again, I'm not a doc and I don't have peripheral neuropathy (PN) myself, but I've heard some folks describe their PN using the exact words "pins and needles".
While MGUS is generally described as an asymptomatic condition, there are several folks on this forum with MGUS that experience PN.
There are also some plasma cell disorders and versions of myeloma where very little or no monoclonal protein will show up on an SPEP/IFE.
So, given that you have a faint IgA kappa band and PN-like symptoms and your neurologist has ruled out neurological sources for the PN (electrophysiological sources, etc), I might suggest seeing a multiple myeloma specialist sooner than 6 months from now. IMHO, I also wouldn't leave it to a neurologist to make the call on whether to see a hematologist or not, given this new information.
Again, it pays to see a hematologist/oncologist that specializes in multiple myeloma when first getting diagnosed. Folks on the forum can recommend specialists in your area if you let us know what city you are in.
While MGUS is generally described as an asymptomatic condition, there are several folks on this forum with MGUS that experience PN.
There are also some plasma cell disorders and versions of myeloma where very little or no monoclonal protein will show up on an SPEP/IFE.
So, given that you have a faint IgA kappa band and PN-like symptoms and your neurologist has ruled out neurological sources for the PN (electrophysiological sources, etc), I might suggest seeing a multiple myeloma specialist sooner than 6 months from now. IMHO, I also wouldn't leave it to a neurologist to make the call on whether to see a hematologist or not, given this new information.
Again, it pays to see a hematologist/oncologist that specializes in multiple myeloma when first getting diagnosed. Folks on the forum can recommend specialists in your area if you let us know what city you are in.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
Thank you for your reply.
I'm from western Colorado, equal distance from Denver and Salt Lake City, Utah.
I'm from western Colorado, equal distance from Denver and Salt Lake City, Utah.
Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
I'm from Colorado too.
For initial diagnostic purposes, there are some good specialists at both of the Denver institutes listed in the link below (I've met with doctors at both institutes).
https://myelomabeacon.org/resources/treatment-centers/#Colorado
There are some different considerations in choosing either of these facilities if you in fact have a plasma cell disorder and require treatment, but you don't need to worry about those issues at this stage.
For initial diagnostic purposes, there are some good specialists at both of the Denver institutes listed in the link below (I've met with doctors at both institutes).
https://myelomabeacon.org/resources/treatment-centers/#Colorado
There are some different considerations in choosing either of these facilities if you in fact have a plasma cell disorder and require treatment, but you don't need to worry about those issues at this stage.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
I have yet to see a specialist but got my doctor to order a free light chain test. Now I am confused.
Previously I had 2 electrophoresis tests three months apart, both of which said I had a normal SPEP pattern, faint IgA kappa band.
I did another electrophoresis this month (6 months later) which said normal SPEP, IFE shows a normal pattern; no monoclonal proteins seen.
However my free light chain test results were
Kappa Lt Chns Free, Serum 2.45 H (0.33-1.94 mg/dL) Final
Lambda Lt Chns Free, Serum 1.43 (0.57-2.63 mg/dL) Final
Kappa/Lambda Lt Chn Free Ratio, Serum 1.71 H (0.26-1.65) Final
From what I understand these numbers aren't very high, but I don't know what to make of this, Does it mean I don't have a MGUS, or just the amount is so low its hard to detect?
I don't know if anyone can make sense of this, but for awhile doctors were watching for antiphospholipid antibodies because of multiple miscarriages. They tested for IgM and IgG antibodies, but not IgA, I believe I read because it was uncommon, but also read there was a link between MGUS and antiphospholipid antibodies and one article that stated MGUS IgA will have a false positive for IgA antiphospholipid antibodies.
My doctor also ran an ANA test, which came back positive, only 1:80, but still frustrating.
I am moving to Minnesota next month, so maybe I can try to get into Mayo. I just don't understand if that is necessary now.
Any advice would be greatly appreciated.
Previously I had 2 electrophoresis tests three months apart, both of which said I had a normal SPEP pattern, faint IgA kappa band.
I did another electrophoresis this month (6 months later) which said normal SPEP, IFE shows a normal pattern; no monoclonal proteins seen.
However my free light chain test results were
Kappa Lt Chns Free, Serum 2.45 H (0.33-1.94 mg/dL) Final
Lambda Lt Chns Free, Serum 1.43 (0.57-2.63 mg/dL) Final
Kappa/Lambda Lt Chn Free Ratio, Serum 1.71 H (0.26-1.65) Final
From what I understand these numbers aren't very high, but I don't know what to make of this, Does it mean I don't have a MGUS, or just the amount is so low its hard to detect?
I don't know if anyone can make sense of this, but for awhile doctors were watching for antiphospholipid antibodies because of multiple miscarriages. They tested for IgM and IgG antibodies, but not IgA, I believe I read because it was uncommon, but also read there was a link between MGUS and antiphospholipid antibodies and one article that stated MGUS IgA will have a false positive for IgA antiphospholipid antibodies.
My doctor also ran an ANA test, which came back positive, only 1:80, but still frustrating.
I am moving to Minnesota next month, so maybe I can try to get into Mayo. I just don't understand if that is necessary now.
Any advice would be greatly appreciated.
Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
Well, given you are suffering from peripheral neuropathy that still hasn't been explained by a diagnosis, why not make an appointment with the Mayo to get to the bottom of all this? Alternatively, you could go to the Colorado Blood Cancer Institute or the blood cancer department at University Hospital in Denver and see if they can make sense of all this. However, I might lean towards the Mayo given that they have a very good reputation for cross-specialty coordination when diagnosing challenging cases.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
Dear NotSamantha,
You may have MGUS based on what you are reporting. If you do, the level of abnormal plasma cells is so low that the M-spike (abnormal antibody produced by the clonal plasma cells) is barely detectable. The SPEP is not as sensitive as the immunofixation test at picking up very low level M-spikes. That is why the SPEP appeared more or less normal the first 2 times, but the immunofixation reported the trace IgA kappa spike.
It is encouraging that the most recent immunofixation is normal. As such, you could just be dealing with a false positive. Nonetheless, given that you have 2 previous abnormal results and your serum kappa free light chain level and ratio are slightly tilted in an abnormal direction (and the direction you might expect in someone with IgA kappa MGUS), I agree that you should see a myeloma specialist at some point.
If you do have MGUS, I doubt it is responsible for your foot and back symptoms. It would be unusual for peripheral neuropathy associated with a plasma cell disorder (MGUS, amyloidosis, etc.) to affect a single foot. It typically manifests in both feet at roughly the same time. To me, it sounds as though you may have a nerve root impingement in your lower back (most often caused by a ruptured disc or arthritis in the spine). If the symptoms are worsening over time, it might be worth considering an MRI of the lower spine or EMG / nerve conduction studies to further evaluate this possibility, if not already done.
Patients with MGUS can have falsely positive results on antiphospholipid antibody testing. Did your testing for antiphospholipid antibodies come back normal or abnormal?
If your symptoms are fairly stable over time, I like the idea of waiting until you get to Minnesota to see the Mayo crew. There, you could see a neurologist at the same time as the myeloma specialist with knowledge about the link between plasma cell disorders (MGUS, amyloidosis, etc) and neuropathy. If symptoms are worsening over time, you may want to see a myeloma specialist sooner.
Best of luck and let us know how things go!
Best,
Pete V.
You may have MGUS based on what you are reporting. If you do, the level of abnormal plasma cells is so low that the M-spike (abnormal antibody produced by the clonal plasma cells) is barely detectable. The SPEP is not as sensitive as the immunofixation test at picking up very low level M-spikes. That is why the SPEP appeared more or less normal the first 2 times, but the immunofixation reported the trace IgA kappa spike.
It is encouraging that the most recent immunofixation is normal. As such, you could just be dealing with a false positive. Nonetheless, given that you have 2 previous abnormal results and your serum kappa free light chain level and ratio are slightly tilted in an abnormal direction (and the direction you might expect in someone with IgA kappa MGUS), I agree that you should see a myeloma specialist at some point.
If you do have MGUS, I doubt it is responsible for your foot and back symptoms. It would be unusual for peripheral neuropathy associated with a plasma cell disorder (MGUS, amyloidosis, etc.) to affect a single foot. It typically manifests in both feet at roughly the same time. To me, it sounds as though you may have a nerve root impingement in your lower back (most often caused by a ruptured disc or arthritis in the spine). If the symptoms are worsening over time, it might be worth considering an MRI of the lower spine or EMG / nerve conduction studies to further evaluate this possibility, if not already done.
Patients with MGUS can have falsely positive results on antiphospholipid antibody testing. Did your testing for antiphospholipid antibodies come back normal or abnormal?
If your symptoms are fairly stable over time, I like the idea of waiting until you get to Minnesota to see the Mayo crew. There, you could see a neurologist at the same time as the myeloma specialist with knowledge about the link between plasma cell disorders (MGUS, amyloidosis, etc) and neuropathy. If symptoms are worsening over time, you may want to see a myeloma specialist sooner.
Best of luck and let us know how things go!
Best,
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Normal SPEP pattern, faint IgA kappa band - MGUS?
I am going to the Mayo Clinic for my one-year follow-up next week. Last year I still had no visible M-spike, but had elevated kappa free light chains (2.39) and elevated free light chain ratio (2.23). The doctor said he might not even consider that MGUS, but he wanted to check levels again in a year. Within the last year I found that I have heart palpitations, specifically paroxysmal supraventricular tachycardia and figured why not talk to a cardiologist while I am getting my other blood work done. When I was doing my due diligence on heart conduction issues I came across "amyloidosis" as a cause.
So I'm wondering if it might be amyloidosis that I have. Would that fit with the lab results I've shared here and in the other posts in this thread?
So I'm wondering if it might be amyloidosis that I have. Would that fit with the lab results I've shared here and in the other posts in this thread?
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