Hello,
I am 48 years old and have had 4 fractures in the past 3 years (olecranon, femoral condyle, tibia, and rib). I don't think I would necessarily call the fractures pathological, but even my orthopedic thought the multiple fractures were not normal. I had a DEXA, but it came back normal. I continue to have pain through the recovery of each of these injuries, and the fatigue is horrible.
About 6 months after my last fracture, I developed purpura on my arm. That sent me to a hematologist. I have been slightly anemic for about 10 years. For the last 6 months I have also had a high albumin, A/G ratio, and low lymphocyte count. My protein and calcium have pretty much been in the 7.6 range and 9.7 range respectively (i.e., normal). The hematologist ordered a factor VIII which came back high 175 (upper range of normal 150) (does this test suggest hyperviscosity?). He also tested IgM and free light chains. These results appear to be in the normal change:
IgM: 86. 40-230 mg/Dl
Free light kappa 12.3
Free light gamma 10.5
Ratio 1.17
My question is, given the totality of my clinical picture, should we stop considering MGUS, smoldering multiple myeloma, or multiple myeloma given the normal findings on IgM and free light tests, or are there other tests we should be considering?
I really appreciate any insight any of you can provide!
Thank you!
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Re: Fractures, anemia, high albumin & myeloma testing
Hi Maslow,
Welcome to the forum. Sorry to hear about all your fractures at such a young age.
I find it a bit odd that your doctor only checked your IgM level and not your IgG and IgA levels if myeloma was at all suspected. Unfortunately, you really can't rule out multiple myeloma with only an IgM and free light chain assay test.
Additionally, the presence of purpura is sometimes a flag for amyloidosis, which can often occur in patients with multiple myeloma. Do you also have any purpura around your eyes?
The standard screening tests for multiple myeloma are:
Serum immunofixation
Serum protein electrophoresis
Serum free light chain assay
Quantified immunoglobulins (IgG, IgA, IgM)
If amyloidosis is suspected, a 24-hour urine protein electrophoresis is an an additional test you also want to get that may help provide some additional clues. But to actually test for amyloidosis, you would would need to get a fat pad tissue biopsy or have it specifically looked for as part of a bone marrow biopsy test.
You said you are fatigued. How is your hemoglobin level doing? Also, how is your creatinine level doing?
I might suggest seeking out a hematologist that specializes in multiple myeloma given the bone fractures and presence of purpura. If you let us know what city you are in, folks on this forum can make some recommendations as to where to find these specialists.
Hope this helps a bit.
Welcome to the forum. Sorry to hear about all your fractures at such a young age.
I find it a bit odd that your doctor only checked your IgM level and not your IgG and IgA levels if myeloma was at all suspected. Unfortunately, you really can't rule out multiple myeloma with only an IgM and free light chain assay test.
Additionally, the presence of purpura is sometimes a flag for amyloidosis, which can often occur in patients with multiple myeloma. Do you also have any purpura around your eyes?
The standard screening tests for multiple myeloma are:
Serum immunofixation
Serum protein electrophoresis
Serum free light chain assay
Quantified immunoglobulins (IgG, IgA, IgM)
If amyloidosis is suspected, a 24-hour urine protein electrophoresis is an an additional test you also want to get that may help provide some additional clues. But to actually test for amyloidosis, you would would need to get a fat pad tissue biopsy or have it specifically looked for as part of a bone marrow biopsy test.
You said you are fatigued. How is your hemoglobin level doing? Also, how is your creatinine level doing?
I might suggest seeking out a hematologist that specializes in multiple myeloma given the bone fractures and presence of purpura. If you let us know what city you are in, folks on this forum can make some recommendations as to where to find these specialists.
Hope this helps a bit.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fractures, anemia, high albumin & myeloma testing
Thank you so much for your response - I can't tell you how much I appreciate it.
I am in Bend, Oregon, which is a relatively small town about 3.5 hours from Portland. I would very much appreciate any recommendations of specialists near here.
You stated in your response: "I find it a bit odd that your doctor only checked your IgM level and not your IgG and IgA levels if myeloma was at all suspected."
I thought so too. What else do you think he could be checking by looking at just IgM and free light chains? He did not tell me he was looking at myeloma, I just assumed because of the tests and my history.
As for my hemoglobin, it is usually just under 12, with the lowest being 9.7. He ordered a CBC, but they haven't released the results to me yet.
My creatinine has been declining over time. Last measurement was 0.64 (0.60-1.35).
I really appreciate the time you all invest in new folks like myself. Your kindness and experience is invaluable.
Thank you for any continued insights!
I am in Bend, Oregon, which is a relatively small town about 3.5 hours from Portland. I would very much appreciate any recommendations of specialists near here.
You stated in your response: "I find it a bit odd that your doctor only checked your IgM level and not your IgG and IgA levels if myeloma was at all suspected."
I thought so too. What else do you think he could be checking by looking at just IgM and free light chains? He did not tell me he was looking at myeloma, I just assumed because of the tests and my history.
As for my hemoglobin, it is usually just under 12, with the lowest being 9.7. He ordered a CBC, but they haven't released the results to me yet.
My creatinine has been declining over time. Last measurement was 0.64 (0.60-1.35).
I really appreciate the time you all invest in new folks like myself. Your kindness and experience is invaluable.
Thank you for any continued insights!
Re: Fractures, anemia, high albumin & myeloma testing
For a Portland multiple myeloma specialist, see this thread:
"Portland, Oregon multiple myeloma specialists" (started April 7, 2014)
including the post by JimNY.
Assuming a normal hemoglobin level of 13.4 - 18 g/dL (please check what your normal range is), a hemoglobin level under 12 g/dL and (certainly 9.7 g/dL) further pulls into question whether anemia due to a plasma cell disorder might be in play? But a doctor would need to definitively tie your anemia back to a plasma cell disorder as opposed to some other cause before making this call.
In any case, this might be another good reason to visit a specialist.
"Portland, Oregon multiple myeloma specialists" (started April 7, 2014)
including the post by JimNY.
Assuming a normal hemoglobin level of 13.4 - 18 g/dL (please check what your normal range is), a hemoglobin level under 12 g/dL and (certainly 9.7 g/dL) further pulls into question whether anemia due to a plasma cell disorder might be in play? But a doctor would need to definitively tie your anemia back to a plasma cell disorder as opposed to some other cause before making this call.
In any case, this might be another good reason to visit a specialist.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fractures, anemia, high albumin & myeloma testing
Thank you so much for the link, I really appreciate it.
The last hemoglobin test I had a few months ago showed 12.1 (normal) with a range of (12.0-16.0), and yes you are right, I need to have an open discussion with him.
Again, I really appreciate your insight!
The last hemoglobin test I had a few months ago showed 12.1 (normal) with a range of (12.0-16.0), and yes you are right, I need to have an open discussion with him.
Again, I really appreciate your insight!
5 posts
• Page 1 of 1