I am a 56-year-old female and was diagnosed with IgM kappa MGUS almost two years ago to the day. It all began with a trip to a new neurologist for idiopathic peripheral neuropathy. My peripheral neuropathy is really mild according to my nerve conduction study but has progressed over the last 5 years or so. I have always been a runner, so even a mild case of neuropathy was very aggravating, to say the least.
Then the bone pain started, and when my new neurologist did blood work, low and behold an M-spike of 1.3 g/dL (13 g/l). Not high from everything I was able to research. My IgM two years ago was around 385, again not extremely high, but has progressed up to 480 in he past two years.
Again, none of this concerns me, except that the hematologist / oncologist indicates that this paraprotein is somewhat rare and they do not see a lot of patients with this IgM and kappa light chain combination. Hummmm.
At any rate, I deal with this neuropathy and the bone pain as best I can. I’m at the point now of blood work every 3 months and see my doctor every 6 months. I have complete confidence in my doctor and the team where I go.
My question, and I will certainly visit with my doctor about this, but I have experienced two fractures in the past year. One in my foot and the other in my wrist. No apparent injury to warrant a fracture, and both were hairline fractures, but still painful.
Is there any research on MGUS or other evidence that fractures are a sign of MGUS progressing?
Thanks a bunch!
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Re: Are fractures a sign of MGUS progression?
Hi Shan,
Have you had a DEXA scan to see if you suffer from osteopenia or osteoporosis? MGUS and smoldering myeloma can cause either of the aforementioned conditions and in turn make you more prone to fractures.
Have you discussed taking any bisphosphonates such as Zometa with your doctor?
Have you recently had a PET/CT or whole-body MRI? If not, I might suggest getting one, especially based on this comment from the following article specific to IgM patients:
http://www.hematology.org/Thehematologist/Ask/3186.aspx
"Skeletal survey (radiographic or MRI myeloma protocol) is recommended for patients with bone pain and for patients in whom IgM multiple myeloma is a consideration"
By the way, in one study by the Mayo, 70% of their IgM MGUS patients had an IgM-kappa isotype in comparison to 30% having an IgM-lambda isotype.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3773469/
Have you had a DEXA scan to see if you suffer from osteopenia or osteoporosis? MGUS and smoldering myeloma can cause either of the aforementioned conditions and in turn make you more prone to fractures.
Have you discussed taking any bisphosphonates such as Zometa with your doctor?
Have you recently had a PET/CT or whole-body MRI? If not, I might suggest getting one, especially based on this comment from the following article specific to IgM patients:
http://www.hematology.org/Thehematologist/Ask/3186.aspx
"Skeletal survey (radiographic or MRI myeloma protocol) is recommended for patients with bone pain and for patients in whom IgM multiple myeloma is a consideration"
By the way, in one study by the Mayo, 70% of their IgM MGUS patients had an IgM-kappa isotype in comparison to 30% having an IgM-lambda isotype.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3773469/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Are fractures a sign of MGUS progression?
Hi Shan,
Just to add a bit to the helpful feedback Multibilly already provided, I'm wondering why you have been classified as having IgM MGUS. To me, it looks like you have biclonal MGUS, meaning there are two types of monoclonal immunoglobulin in your M-spike: some monoclonal IgM, but mostly monoclonal IgG or IgA.
Here's why I say this.
Your M-spike, which measures the amount of monoclonal immunoglobulin (paraprotein) in your blood, was 1.3 g/dL at diagnosis. The's the equivalent of 1,300 mg per dL.
Your total IgM at diagnosis, which included both monoclonal and polyclonal IgM, was 385 mg per deciliter. So even if all your IgM was monoclonal, 915 mg out of 1,300 mg of your M-spike would be something other than monoclonal IgM (915 = 1,300 - 385).
So, as I said, it seems you have biclonal MGUS, with a small IgM component, and the rest perhaps monoclonal IgG (based on one of your earlier postings).
If, for example, your monoclonal IgM was, say, 285 mg/dL at diagnosis, then the breakdown of your M-spike at diagnosis would have been:
Monoclonal IgM - 285 mg/dL (by assumption)
Monoclonal IgG - 1,015 mg/dL (=1,300-285)
Total monoclonal immunoglobulin - 1,300 mg/dL (what you said in your post above)
I would suggest checking your serum protein electrophoresis (SPEP) reports to see if they say whether you have two or more monoclonal protein (M-spike) peaks, and whether they report what each peak was.
Good luck!
Just to add a bit to the helpful feedback Multibilly already provided, I'm wondering why you have been classified as having IgM MGUS. To me, it looks like you have biclonal MGUS, meaning there are two types of monoclonal immunoglobulin in your M-spike: some monoclonal IgM, but mostly monoclonal IgG or IgA.
Here's why I say this.
Your M-spike, which measures the amount of monoclonal immunoglobulin (paraprotein) in your blood, was 1.3 g/dL at diagnosis. The's the equivalent of 1,300 mg per dL.
Your total IgM at diagnosis, which included both monoclonal and polyclonal IgM, was 385 mg per deciliter. So even if all your IgM was monoclonal, 915 mg out of 1,300 mg of your M-spike would be something other than monoclonal IgM (915 = 1,300 - 385).
So, as I said, it seems you have biclonal MGUS, with a small IgM component, and the rest perhaps monoclonal IgG (based on one of your earlier postings).
If, for example, your monoclonal IgM was, say, 285 mg/dL at diagnosis, then the breakdown of your M-spike at diagnosis would have been:
Monoclonal IgM - 285 mg/dL (by assumption)
Monoclonal IgG - 1,015 mg/dL (=1,300-285)
Total monoclonal immunoglobulin - 1,300 mg/dL (what you said in your post above)
I would suggest checking your serum protein electrophoresis (SPEP) reports to see if they say whether you have two or more monoclonal protein (M-spike) peaks, and whether they report what each peak was.
Good luck!
Re: Are fractures a sign of MGUS progression?
Nice catch Terry.
Shan, it would also be good to include the units of measure when you post your IgM results, just to be sure that isn't what is causing the M-spike math not to work out for a purely IgM-type case of MGUS (Terry correctly assumed the units were the typical mg/dL, but maybe your lab is using some other unit?). You may also want to refer to your serum immunofixation results to see if it reports detecting anything other than IgM-kappa.
Shan, it would also be good to include the units of measure when you post your IgM results, just to be sure that isn't what is causing the M-spike math not to work out for a purely IgM-type case of MGUS (Terry correctly assumed the units were the typical mg/dL, but maybe your lab is using some other unit?). You may also want to refer to your serum immunofixation results to see if it reports detecting anything other than IgM-kappa.
Last edited by Multibilly on Mon Jul 23, 2018 1:14 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Are fractures a sign of MGUS progression?
Thank you all for your responses. I will check the loooong list of results for each of my SPEP and immunoglobulins to see how each antibody is measured. I’m not good at deciphering those lab results. I believe my IgG was actually in the low range on my first testing. But I’m speaking from memory only.
Shan
Shan
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swmorgan - Name: Shan
- When were you/they diagnosed?: August 2016 IgM MGUS
- Age at diagnosis: 54
5 posts
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