Hi Everyone,
I am new to this site and so happy to have found it.
I am a 41-year-old woman who has been living with MGUS since 2006, when it was discovered as part of a follow up regarding elevated eosinophils and hyper IgM (at that time, IgM count was 700). For the past few years I have been monitored: IgM count remains high (450), IgA low (66), IgG normal (1450 or so). My free lambda / kappa ratio is normal.
However, in the past year I have developed small fiber neuropathy (diagnosed by blood test) that may be related to MGUS or may be the result of B6 toxicity (I was vegan for years and took B complex in normal amounts, but it led to a toxicity. Go figure). I am being monitored for autonomic neuropathy as I have struggled with constipation and POTS for about 5-6 years. Chronic fatigue is part of my life but I do remain very active.
My reason for writing now is because I just had my SPEP repeated as usual and gamma globulin is very slightly elevated, 1.67 (0.60 - 1.60) and the MGUS remains except this time it was noted as two small "possible M spikes." Spike 1 = 0.19 g/dL and Spike 2 = 0.12 g/dL. While I have known for years that I had a "faint" or "hazy" IgG kappa bands, no one has ever mentioned two before. Urine thus far has always been normal.
My doctors are being very vague and just recommending that I have repeat SPEP in 6 months. They will not indicate whether or not this is a worsening of the situation or what my prognosis is. Obviously I am concerned and would appreciate any of the insight and wisdom of this forum. I know all of you understand the frustration of living with this uncertainty.
Thank you in advance!!!
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Re: Latest SPEP shows two small M-spikes - any significance?
There have been some discussions re: biclonal gammopathy. I've included a link to one:
"Biclonal gammopathy - is it a good thing?" (started Jan 7, 2015)
"Biclonal gammopathy - is it a good thing?" (started Jan 7, 2015)
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Latest SPEP shows two small M-spikes - any significance?
Welcome to the forum, jjnyc.
As is mentioned in the thread that Toni pointed you to, particularly the posting by Dr. Landau, it's not always clear when a reading such as the one you got happens that there really are two M-spikes. It may just be a temporary issue caused, for example, by an infection. Dr. Landau also mentioned that it's not clear that, even if there really are two M-spikes, that it necessarily means anything in terms of the risk of your MGUS progressing to something more serious.
The one thing that caught my eye when I read your posting is that you said you have IgM MGUS. Having IgM as the "involved" immunoglobulin is less common in MGUS, smoldering multiple myeloma, and multiple myeloma. More importantly, myeloma specialists separate out IgM MGUS as a special form of MGUS that has some specific characteristics of its own.
This article specifically about IgM MGUS helps spell out some of the special characteristics of that form of MGUS. It's not too technical, but if you have any questions, I'll see what I can do to help.
Joseph Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein," The Hematologist, Sep 15, 2014 (full text of article)
If you do hear anything more from your doctor about your two M-spikes, please let us know what you find out.
Good luck!
As is mentioned in the thread that Toni pointed you to, particularly the posting by Dr. Landau, it's not always clear when a reading such as the one you got happens that there really are two M-spikes. It may just be a temporary issue caused, for example, by an infection. Dr. Landau also mentioned that it's not clear that, even if there really are two M-spikes, that it necessarily means anything in terms of the risk of your MGUS progressing to something more serious.
The one thing that caught my eye when I read your posting is that you said you have IgM MGUS. Having IgM as the "involved" immunoglobulin is less common in MGUS, smoldering multiple myeloma, and multiple myeloma. More importantly, myeloma specialists separate out IgM MGUS as a special form of MGUS that has some specific characteristics of its own.
This article specifically about IgM MGUS helps spell out some of the special characteristics of that form of MGUS. It's not too technical, but if you have any questions, I'll see what I can do to help.
Joseph Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein," The Hematologist, Sep 15, 2014 (full text of article)
If you do hear anything more from your doctor about your two M-spikes, please let us know what you find out.
Good luck!
Re: Latest SPEP shows two small M-spikes - any significance?
Hi Cheryl,
Thanks so much for posting a reply! I'm sorry if my post was confusing: I have two IgG kappa monoclonal protein bands (0.19 and 0.12). I ALSO have elevated total IgMs. Seemingly separate. Not a monoclonal IgM.
Right now, the protocol is testing every 6 months. I also have autonomic neuropathy. Fairly mild and mostly causing POTS symptoms and constipation. Still unclear to doctors if the neuropathy is related to the MGUS at all. The MGUS has been largely stable since about 2009.
Thanks again and I will keep you posted! Of course, any other thoughts are welcome.
Thanks so much for posting a reply! I'm sorry if my post was confusing: I have two IgG kappa monoclonal protein bands (0.19 and 0.12). I ALSO have elevated total IgMs. Seemingly separate. Not a monoclonal IgM.
Right now, the protocol is testing every 6 months. I also have autonomic neuropathy. Fairly mild and mostly causing POTS symptoms and constipation. Still unclear to doctors if the neuropathy is related to the MGUS at all. The MGUS has been largely stable since about 2009.
Thanks again and I will keep you posted! Of course, any other thoughts are welcome.
Re: Latest SPEP shows two small M-spikes - any significance?
Hi jjnyc,
Sorry I misinterpreted what you wrote earlier. So your elevated IgM is not due to having an IgM M-spike (monoclonal IgM). That's good to know.
I'm not a doctor, but I've heard that having an elevated IgM without any specific cause is not necessarily a sign that there is some underlying disease causing the high IgM. However, with your MGUS, and signs of having two M-spikes, you probably want to have your case reviewed by someone who specializes in plasma cell disorders, not just a local hematologist-oncologist. If you haven't done that already, I'd give it some thought.
It seems to me, though, from what you've said that it's probably fine to continue with the testing every 6 months. The chances are very much in favor of your MGUS staying stable.
Good luck, and do post an update when you have new information. I'm sure I'm not the only person here interested to hear more about what you find out.
Sorry I misinterpreted what you wrote earlier. So your elevated IgM is not due to having an IgM M-spike (monoclonal IgM). That's good to know.
I'm not a doctor, but I've heard that having an elevated IgM without any specific cause is not necessarily a sign that there is some underlying disease causing the high IgM. However, with your MGUS, and signs of having two M-spikes, you probably want to have your case reviewed by someone who specializes in plasma cell disorders, not just a local hematologist-oncologist. If you haven't done that already, I'd give it some thought.
It seems to me, though, from what you've said that it's probably fine to continue with the testing every 6 months. The chances are very much in favor of your MGUS staying stable.
Good luck, and do post an update when you have new information. I'm sure I'm not the only person here interested to hear more about what you find out.
5 posts
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