Hi JimNY,
I'll get the details on the reticuloendotheliosis in a few days when I return to the cancer center.
There's so many folks looking into my case that something was bound to turn up in addition to the typical plasma cell dyscrasia items (to explain my anemia and tibial bone marrow edema / knee swelling, low IgM).
Initially, I didn't realize that there was such a thing as selectively low IgM (SIgM). I thought that my IgM level had simply dropped as related to the common decrease of uninvolved immunoglobulins associated with MGUS / myeloma, just as you pointed out. It took me a bit to realize that a below normal IgM with all other levels intact was a rare condition.
Here's some info on SIgM which is different from the usual drop in uninvolved immunoglobulins and apparently I'm the only person on this forum that has SIgM that is not due to treatment (temporary drug effect). My IgM is in the mid 20's while all other immunoglobulins are well within normal range.
"Selective IgM deficiency (sIGMD) is a very rare disease (less than 300 cases described in literature) and is defined by low levels of IgM (< 0.40 g/L according to current guidelines)" .
Helpful SIgM article: http://emedicine.medscape.com/article/137693-overview .
It's not thought that my anemia, which is mild, is tied to the clonal plasma cell marrow infiltration, which at 10% isn't very high. Reticuloendotheliosis, I've read, can result in anemia and isolated marrow swelling, and low IgM can be tied to RES issues. It does sort of fit together, but maybe the reticuloendotheliosis will turn out to be nothing at all.
I'm confident my diagnosis of reticuloendotheliosis will be explained in a few days when I return for additional testing / appointments in a few days.
Thanks for replying.
Forums
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Low IgM antibody levels - any cause for concern?
Before commenting on the RES malignancy tumor registry tagging, here's a summary of my overall high risk MGUS / smoldering myeloma situation:
Per a BMB performed last spring (2014), my clonal plasma cell count was 10% with an M spike that at the time of 0.400 g/dL (4 g/L) which has since risen to 0.700 g/dL by August 2014, fallen slightly, and returned to 0.700 during my most recent workup in January 2015. An IgG kappa Bence Jones proteinuria was noted (positive) via immunofixation last spring. UPEP is clear of BJP. FLC ratio is within normal limits. Immunoparesis is present (IgM below normal, at 26 mg/dL, since August 2014, in January rose to "28", but still below the normal low range of "35").
RES Update:
I'm a little late following up on this thread. It turned out that I was given the reticular endothelial system (RES) malignancy tag within the tumor registry due to my overall situation (my problem list has included MGUS, multiple myeloma in remission [perhaps this is how smoldering myeloma is coded], plasma cell dyscrasia) - the "problem list" items (ICD codes), plus the fact that my IgM has remained below normal for 6+ months - the RES malignancy is a catch all / broad item.
Unfortunately, I've had a persisting low grade fever of up to 100 F (37.8 C) the past 3 months. I'll create a post tied to the fever and other infections that have all appeared since IgM fell below normal. Probably not related, but I'm curious to see if others have had recurring fevers without an explanation.
Per a BMB performed last spring (2014), my clonal plasma cell count was 10% with an M spike that at the time of 0.400 g/dL (4 g/L) which has since risen to 0.700 g/dL by August 2014, fallen slightly, and returned to 0.700 during my most recent workup in January 2015. An IgG kappa Bence Jones proteinuria was noted (positive) via immunofixation last spring. UPEP is clear of BJP. FLC ratio is within normal limits. Immunoparesis is present (IgM below normal, at 26 mg/dL, since August 2014, in January rose to "28", but still below the normal low range of "35").
RES Update:
I'm a little late following up on this thread. It turned out that I was given the reticular endothelial system (RES) malignancy tag within the tumor registry due to my overall situation (my problem list has included MGUS, multiple myeloma in remission [perhaps this is how smoldering myeloma is coded], plasma cell dyscrasia) - the "problem list" items (ICD codes), plus the fact that my IgM has remained below normal for 6+ months - the RES malignancy is a catch all / broad item.
Unfortunately, I've had a persisting low grade fever of up to 100 F (37.8 C) the past 3 months. I'll create a post tied to the fever and other infections that have all appeared since IgM fell below normal. Probably not related, but I'm curious to see if others have had recurring fevers without an explanation.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Low IgM antibody levels - any cause for concern?
The reticuloendotheliosis reappeared (tumor registry). Still sure it's just a billing / coding related item as noted within this thread by others. I don't think it has anything to do with my smoldering myeloma, immunoparesis, anemia, etc.
Luckily, my fevers vanished after a few months. Maybe they were tied to low IgM, but doubtful, as a ton of testing (PCR, blood cultures – you name it, I was probably tested) couldn't find anything. Perhaps a lengthy round of power antibiotics knocked out an infection that couldn't be identified.
The reticuloendotheliosis, though, is something that I don't pay any attention to, though I preferred when it was removed from my chart for a while
Luckily, my fevers vanished after a few months. Maybe they were tied to low IgM, but doubtful, as a ton of testing (PCR, blood cultures – you name it, I was probably tested) couldn't find anything. Perhaps a lengthy round of power antibiotics knocked out an infection that couldn't be identified.
The reticuloendotheliosis, though, is something that I don't pay any attention to, though I preferred when it was removed from my chart for a while
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
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