I'm hoping to get some opinions on my situation.
A little bit of background. I am a female, age 37. I've had various symptoms over the last 8 years, including dizziness, tiredness, muscle fatigue, sore joints, occasional back soreness, brain fog, IBS, and night sweats (not drenching). I bruise easily but wouldn't say I have excessive bruising. I also have petechiae on my skin, but they are scattered and I wouldn't say they are in an excessive amounts. I have also noticed that when I sit at my desk there is a noticeable feeling on my left side, possibly an enlarged spleen. I also have been having what I would describe as hot flashes, but no fever.
I have seen a rheumatologist and tested positive for lupus antibodies, which I guess explains some of these symptoms. I also have low vitamin D and vitamin B12. I've had a number of blood tests over the last 8 years and my WBC count and platelet count have declined over the years, but they are still at the lower end of normal. No other abnormal findings in my blood work, although I haven't had a CBC since March.
Here is the thing that has now caused me to look at multiple myeloma. A week ago, I fractured my pointer finger with no apparent cause. It was a little sore, so I pulled on it and heard a noise and it started to swell. An x-ray showed an oblique fracture.
The thing that confuses me is that I wouldn't expect a fracture in this location. Everything I read indicates that it affects the spine and ribs mostly. The doctor ordered an MRI and a metabolic panel.
Would the MRI confirm a diagnosis of multiple myeloma, or could it be normal even if I have the disease?
Also, if I have been exhibiting symptoms for 8 years, wouldn't I have had abnormal findings in my blood or be very very sick at this point?
If the MRI is negative should I still pursue this and, if so, which tests do I need to ask for to confirm or exclude this diagnosis?
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Re: Suspicion of multiple myeloma (but not diagnosed)
Hi Lori,
First off, I'm not a doc, so please verify all this with your doc.
It would be very unusual to have multiple myeloma related bone damage in your fingers. Also, as you mentioned, a lot of your symptoms can indeed be explained by lupus. If it weren't for the lupus, I would be thinking amyloidosis may potentially be the cause of your bruising and petichiae, given the other accompanying symptoms.
An MRI would likely reveal if there were any osteolytic bone damage that led to the finger fracture, but again it's unlikely (but not impossible) that multiple myeloma would be the cause of your fracture. If osteolytic bone damage were detected, then you would run some basic lab tests such as a serum protein electrophoresis, serum immunofixation, quantified immunoglobulin, serum free light chain and a 24 hour urine test to see if a plasma cell disorder such as multiple myeloma might be in play. Also, if your protein level comes back high on your metabolic panel, then that would also be a good reason to run the aforementioned lab tests. Also, if a high creatinine or calcium level on the metabolic panel could not be explained by the lupus diagnosis, then you might also consider running the aforementioned tests.
Again, please verify all this with your doc.
First off, I'm not a doc, so please verify all this with your doc.
It would be very unusual to have multiple myeloma related bone damage in your fingers. Also, as you mentioned, a lot of your symptoms can indeed be explained by lupus. If it weren't for the lupus, I would be thinking amyloidosis may potentially be the cause of your bruising and petichiae, given the other accompanying symptoms.
An MRI would likely reveal if there were any osteolytic bone damage that led to the finger fracture, but again it's unlikely (but not impossible) that multiple myeloma would be the cause of your fracture. If osteolytic bone damage were detected, then you would run some basic lab tests such as a serum protein electrophoresis, serum immunofixation, quantified immunoglobulin, serum free light chain and a 24 hour urine test to see if a plasma cell disorder such as multiple myeloma might be in play. Also, if your protein level comes back high on your metabolic panel, then that would also be a good reason to run the aforementioned lab tests. Also, if a high creatinine or calcium level on the metabolic panel could not be explained by the lupus diagnosis, then you might also consider running the aforementioned tests.
Again, please verify all this with your doc.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Suspicion of multiple myeloma (but not diagnosed)
Thanks for your response Multibilly.
I received the results of the MRI and they didn't find anything unusual in the bone. They only did a basic metabolic panel and these were the results:
Creatinine - 0.77 (ref .50-1.10)
eGFR - 99 (ref >=60)
Calcium - 9.2 (ref 8.6-10.2)
I wish they would have done a full CBC and the total protein. I'm not sure whether or not to still request the lab tests that you mentioned. I made an appointment with a hematologist but I'm afraid they are going to think I'm crazy asking for all these tests.
I've been convinced all weekend that I was having kidney problems since I've noticed an increase in my urine frequency and a few bubbles in my urine (not foamy by any means). If my kidneys weren't working, I assume my eGFR would be lower, correct?
I received the results of the MRI and they didn't find anything unusual in the bone. They only did a basic metabolic panel and these were the results:
Creatinine - 0.77 (ref .50-1.10)
eGFR - 99 (ref >=60)
Calcium - 9.2 (ref 8.6-10.2)
I wish they would have done a full CBC and the total protein. I'm not sure whether or not to still request the lab tests that you mentioned. I made an appointment with a hematologist but I'm afraid they are going to think I'm crazy asking for all these tests.
I've been convinced all weekend that I was having kidney problems since I've noticed an increase in my urine frequency and a few bubbles in my urine (not foamy by any means). If my kidneys weren't working, I assume my eGFR would be lower, correct?
Re: Suspicion of multiple myeloma (but not diagnosed)
Lori,
Over the last 18 months, my eGFR has ranged between 48 and 52 and my kidneys are fine.
Over the last 18 months, my eGFR has ranged between 48 and 52 and my kidneys are fine.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Suspicion of multiple myeloma (but not diagnosed)
Hi Lori,
I don't think your hematologist will think you are crazy for requesting a basic battery of multiple myeloma tests given the symptoms you've outlined here.
I don't think your hematologist will think you are crazy for requesting a basic battery of multiple myeloma tests given the symptoms you've outlined here.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Suspicion of multiple myeloma (but not diagnosed)
I finally got the results from the lab work the hematologist did and I'm trying to determine if all the tests needed to confirm/deny a case of multiple myeloma were done.
Comp. Metabolic Panel - all tests were within range
Urinalysis, complete - all tests were within range
CBC - all tests were within range
Protein, Total and Protein Electrophoresis w/ Refl IFE
Protein, total, serum
Protein, total - 6.7 (6.1-8.1)
Protein Electrophoresis, Serum
Albumin - 3.9 (3.8-4.8)
Alpha 1 Glob - 0.3 (0.2-0.3)
Alpha 2 Glob - 0.7 (0.5-0.9)
Beta 1 Glob - 0.5 (0.4-0.6)
Beta 2 Glob - 0.2 (0.2-0.5)
Gamma Glob - 1.2 (0.8-1.7)
Interpretation - Normal Electrophoretic Pattern
Kappa Light chain, free, serum - 11.1 (3.3-19.4)
LD - 131 (100-200)
Is this pretty much enough to confirm that whatever is going on is not MGUS / multiple myeloma, or is there any other tests I need to really rule this out?
Comp. Metabolic Panel - all tests were within range
Urinalysis, complete - all tests were within range
CBC - all tests were within range
Protein, Total and Protein Electrophoresis w/ Refl IFE
Protein, total, serum
Protein, total - 6.7 (6.1-8.1)
Protein Electrophoresis, Serum
Albumin - 3.9 (3.8-4.8)
Alpha 1 Glob - 0.3 (0.2-0.3)
Alpha 2 Glob - 0.7 (0.5-0.9)
Beta 1 Glob - 0.5 (0.4-0.6)
Beta 2 Glob - 0.2 (0.2-0.5)
Gamma Glob - 1.2 (0.8-1.7)
Interpretation - Normal Electrophoretic Pattern
Kappa Light chain, free, serum - 11.1 (3.3-19.4)
LD - 131 (100-200)
Is this pretty much enough to confirm that whatever is going on is not MGUS / multiple myeloma, or is there any other tests I need to really rule this out?
Re: Suspicion of multiple myeloma (but not diagnosed)
Hi Lori,
If the above results were all that were reported in your Protein, Total and Protein Electrophoresis w/ Reflex IFE report, I think it would be fairly safe to say that you don't have a plasma cell dyscrasia such as MGUS or multiple myeloma given all the above test results.
There are some rarer forms of multiple myeloma that only show up in a bone marrow biopsy and not in one's blood and urine lab work, but you don't seem to have any symptoms that would point to taking your testing to that kind of level.
Of course, your doctor is the real authority on making these calls.
If the above results were all that were reported in your Protein, Total and Protein Electrophoresis w/ Reflex IFE report, I think it would be fairly safe to say that you don't have a plasma cell dyscrasia such as MGUS or multiple myeloma given all the above test results.
There are some rarer forms of multiple myeloma that only show up in a bone marrow biopsy and not in one's blood and urine lab work, but you don't seem to have any symptoms that would point to taking your testing to that kind of level.
Of course, your doctor is the real authority on making these calls.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Suspicion of multiple myeloma (but not diagnosed)
You are always so helpful. II really appreciate it.
The results I posted were all that was on the Protein Electrophoresis w/ Reflex IFE report.
I have heard people refer to an "M-spike" being detected on their blood work. Is that something that would have been reported with tests I had?
I have also heard some people say that their myeloma was only detected in the urine and not serum tests. I didn't have a 24-hour urine test but there was no protein detected in the urinalysis so I assume that it's not showing in my urine either, correct?
The results I posted were all that was on the Protein Electrophoresis w/ Reflex IFE report.
I have heard people refer to an "M-spike" being detected on their blood work. Is that something that would have been reported with tests I had?
I have also heard some people say that their myeloma was only detected in the urine and not serum tests. I didn't have a 24-hour urine test but there was no protein detected in the urinalysis so I assume that it's not showing in my urine either, correct?
Re: Suspicion of multiple myeloma (but not diagnosed)
You've been doing your homework.
A serum M-spike (aka abnormal protein, paraprotein, M-protein, etc) is measured via a serum electrophoresis test. If there is no notation of an M-spike anywhere on the report, then it means that one was not found to be measured (that's what you want). About 80% of multiple myeloma and MGUS cases present with a serum M-spike, so this is a good start for you.
The way I understand it, when a lab performs a combination Protein Electrophoresis w/ Reflex IFE test, the IFE (immunofixation) portion of that test is usually only conducted if the electrophoresis portion of the test returns a pattern suggesting the presence of monoclonal protein. You had a normal electrophoretic pattern, so the lab probably either didn't continue with the IFE portion of the test based on the electrophoresis results, or your IFE test results were normal (this would be something you would want to verify with your doc). While the IFE portion of the test doesn't measure one's M-spike, it's very sensitive at detecting the presence of monoclonal protein and telling you what type of monoclonal protein it may be (e.g. IgG lambda, etc).
I didn't realize you only had a spot urine test as opposed to a 24-hour urine test. It is true that sometimes a 24-hour urine test will detect a urine M-spike (aka monoclonal free light chains, Bence Jones proteins, etc), while one's blood work may appear to be free of any monoclonal proteins. But I don't believe it is safe to say that the lack of protein showing up in a spot urine test would mean that a urine M-spike would not possibly show up on a 24 hour urine test. This is also something you would want to verify with your doc. 24 hour urine tests are a bit of a hassle (really, who wants to collect their pee for a day), but they are a very inexpensive tests and can be a valuable test tool.
A serum M-spike (aka abnormal protein, paraprotein, M-protein, etc) is measured via a serum electrophoresis test. If there is no notation of an M-spike anywhere on the report, then it means that one was not found to be measured (that's what you want). About 80% of multiple myeloma and MGUS cases present with a serum M-spike, so this is a good start for you.
The way I understand it, when a lab performs a combination Protein Electrophoresis w/ Reflex IFE test, the IFE (immunofixation) portion of that test is usually only conducted if the electrophoresis portion of the test returns a pattern suggesting the presence of monoclonal protein. You had a normal electrophoretic pattern, so the lab probably either didn't continue with the IFE portion of the test based on the electrophoresis results, or your IFE test results were normal (this would be something you would want to verify with your doc). While the IFE portion of the test doesn't measure one's M-spike, it's very sensitive at detecting the presence of monoclonal protein and telling you what type of monoclonal protein it may be (e.g. IgG lambda, etc).
I didn't realize you only had a spot urine test as opposed to a 24-hour urine test. It is true that sometimes a 24-hour urine test will detect a urine M-spike (aka monoclonal free light chains, Bence Jones proteins, etc), while one's blood work may appear to be free of any monoclonal proteins. But I don't believe it is safe to say that the lack of protein showing up in a spot urine test would mean that a urine M-spike would not possibly show up on a 24 hour urine test. This is also something you would want to verify with your doc. 24 hour urine tests are a bit of a hassle (really, who wants to collect their pee for a day), but they are a very inexpensive tests and can be a valuable test tool.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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