Hi all.
I've been sick awhile, high calcium for at least a year, normal PTH levels, kidney stone surgery in February, anemic, palpitations, high blood pressure, weak, severe back, neck pain. Daily migraines, nausea, sometimes bone pain in feet and lower legs and just started having intermittent burning bone pain in left foot, dizziness.
I have slightly elevated free light lambda chains with slight elevated ratio (urine but not serum). Negative ANA. Normal kidney levels. Elevated alkaline phosphatase. Many levels of CBC were elevated and RDW high. High eosinophils. Immunoglobulin levels in range.
Very sick now. Just in last week I have become bedridden. I have repeated urine and blood and did a skeletal survey and awaiting my Thursday appointment. I tried to read the xrays but nothing glaring.
I'm very symptomatic but my labs aren't extremely crazy.
My lambda light chains, urine were 7.40 (.24-6.66), kappa was in range at 13.40 (1.35-24.19). Ratio was low at 1.81 (2.04-10.37). This was a normal urine, not 24 hour.
I'm in the process of doing the 24-hour today.
Any thoughts? Ty! I don't care if you tell me that it's probable. I just want to know people's opinions. Please.
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8 posts
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caligirrl13 - Name: hope
- Who do you know with myeloma?: myself possibly
- When were you/they diagnosed?: still being tested
- Age at diagnosis: 42
Re: Sick for a while, worried I may have multiple myeloma
Hi Caligirl,
I'm sorry to hear you're feeling so sick, but glad that you reached out to this forum. I'm not a doc, so I'm not going to try to venture any guesses based on just these lab tests. But I am going to ask a few questions so that folks on this forum might better help you.
When you say you have a high calcium level and are anemic, do you know what your specific calcium and hemogloblin (Hgb) levels are? (please include the units of measure).
The 24 hour urine test will hopefully provide some more clues, as a spot urine test doesn't tell you much from a multiple myeloma perspective. Did the doc also run some other serum tests such as Serum Protein Electrophoresis (SPEP) and/or a serum Immunofixation (IFE) test? Do you know those tests results?
If you don't mind me asking, did your doctor mentioned the possibility of multiple myeloma or did you come up with that suspicion on your own?
Does your doc suspect anything else just now?
What kind of a doctor are you seeing right now for this condition?
I'm sorry to hear you're feeling so sick, but glad that you reached out to this forum. I'm not a doc, so I'm not going to try to venture any guesses based on just these lab tests. But I am going to ask a few questions so that folks on this forum might better help you.
When you say you have a high calcium level and are anemic, do you know what your specific calcium and hemogloblin (Hgb) levels are? (please include the units of measure).
The 24 hour urine test will hopefully provide some more clues, as a spot urine test doesn't tell you much from a multiple myeloma perspective. Did the doc also run some other serum tests such as Serum Protein Electrophoresis (SPEP) and/or a serum Immunofixation (IFE) test? Do you know those tests results?
If you don't mind me asking, did your doctor mentioned the possibility of multiple myeloma or did you come up with that suspicion on your own?
Does your doc suspect anything else just now?
What kind of a doctor are you seeing right now for this condition?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Sick for a while, worried I may have multiple myeloma
Hi, Multibilly 
I'm seeing an oncology hematologist at the request of my orthopedic surgeon. I saw him for severe neck pain and he did an MRI of the cervical spine but found nothing notable. I mentioned that I have had high calcium for a year and was symptomatic, as I thought maybe that was causing pain. I told him I thought I might have a parathyroid tumor but he didn't think that because my PTH levels have been normal.
So, anyway, my hematologist tested for the things I mentioned, plus an immunofixation serum panel. Those results were normal. The serum light chains were normal. Hemoglobin was 11.0 (11.1-15.9). MCV, MCH, MCHC were all low. RDW was 16.9 (12.3-15.4). Hematocrit was low end of normal. Ferritin was 9. Calcium was 10. That's the lowest it's been. It was 10.8 in February and I have been over 11 at times. PTH was 41 and pthrp was 0.74, which is normal.
The eosinophils was high at 0.7 (0.0-0.4) and alkaline phosphatase was high at 119 (39-117) and lambda light urine chains were high at 7.40 (0.24-6.66). Kappa was normal at 13.40. The ratio was low at 1.81 (2.04-10.37). ANA was negative. Sedimentation rate and LDH were normal.
It was the hematologist that suggested myeloma. I asked if she thought it could be something else and she said no. She does not feel it is parathyroid related. She ordered a 24-hour urine, some kind of serum inflammation test, I can't recall the name, a skeletal survey, a CAT scan of chest and pelvis. No electrophoresis. I don't know why. She said if it comes back abnormal again, she was sending me to get a bone marrow biopsy.
I don't know what I have. I just know that I'm sick and really have downspiraled just in this past week. My numbers don't really correlate to the severity of my symptoms. I'm used to feeling tired, etc ,.as I have Hashimotos. I've had many surgeries so I'm not being a big baby. Something is very wrong but I don't know what. Was just looking for maybe other people's experience with this.
I'm seeing an oncology hematologist at the request of my orthopedic surgeon. I saw him for severe neck pain and he did an MRI of the cervical spine but found nothing notable. I mentioned that I have had high calcium for a year and was symptomatic, as I thought maybe that was causing pain. I told him I thought I might have a parathyroid tumor but he didn't think that because my PTH levels have been normal.
So, anyway, my hematologist tested for the things I mentioned, plus an immunofixation serum panel. Those results were normal. The serum light chains were normal. Hemoglobin was 11.0 (11.1-15.9). MCV, MCH, MCHC were all low. RDW was 16.9 (12.3-15.4). Hematocrit was low end of normal. Ferritin was 9. Calcium was 10. That's the lowest it's been. It was 10.8 in February and I have been over 11 at times. PTH was 41 and pthrp was 0.74, which is normal.
The eosinophils was high at 0.7 (0.0-0.4) and alkaline phosphatase was high at 119 (39-117) and lambda light urine chains were high at 7.40 (0.24-6.66). Kappa was normal at 13.40. The ratio was low at 1.81 (2.04-10.37). ANA was negative. Sedimentation rate and LDH were normal.
It was the hematologist that suggested myeloma. I asked if she thought it could be something else and she said no. She does not feel it is parathyroid related. She ordered a 24-hour urine, some kind of serum inflammation test, I can't recall the name, a skeletal survey, a CAT scan of chest and pelvis. No electrophoresis. I don't know why. She said if it comes back abnormal again, she was sending me to get a bone marrow biopsy.
I don't know what I have. I just know that I'm sick and really have downspiraled just in this past week. My numbers don't really correlate to the severity of my symptoms. I'm used to feeling tired, etc ,.as I have Hashimotos. I've had many surgeries so I'm not being a big baby. Something is very wrong but I don't know what. Was just looking for maybe other people's experience with this.
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caligirrl13 - Name: hope
- Who do you know with myeloma?: myself possibly
- When were you/they diagnosed?: still being tested
- Age at diagnosis: 42
Re: Sick for a while, worried I may have multiple myeloma
Well, you certainly have a lot of things in play here.
The "inflammation" test might be a CRP (C-Reactive Protein) test?
There are versions of multiple myeloma where the disease is pretty much contained in one's bones and the usual markers for myeloma (monoclonal protein from a serum immunofixation, free light chain values,etc) can appear normal. This is known as nonsecretory multiple myeloma and it occurs in a small fraction of multiple myeloma patients (<5%).
It's good that your doc is talking about a bone marrow biopsy, as that test will confirm or eliminate a diagnosis of some stage of multiple myeloma, whether it be a nonsecretory version or otherwise.
It sounds like your hematologist is pretty capable. But if she is not a myeloma specialist that focuses just on that disease family, you might want to consider seeking one out after your get your various rounds of upcoming test results back. If you let us know what city you live in, folks on this forum can make some recommendations.
Hope this helps a little bit.
The "inflammation" test might be a CRP (C-Reactive Protein) test?
There are versions of multiple myeloma where the disease is pretty much contained in one's bones and the usual markers for myeloma (monoclonal protein from a serum immunofixation, free light chain values,etc) can appear normal. This is known as nonsecretory multiple myeloma and it occurs in a small fraction of multiple myeloma patients (<5%).
It's good that your doc is talking about a bone marrow biopsy, as that test will confirm or eliminate a diagnosis of some stage of multiple myeloma, whether it be a nonsecretory version or otherwise.
It sounds like your hematologist is pretty capable. But if she is not a myeloma specialist that focuses just on that disease family, you might want to consider seeking one out after your get your various rounds of upcoming test results back. If you let us know what city you live in, folks on this forum can make some recommendations.
Hope this helps a little bit.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Sick for a while, worried I may have multiple myeloma
Thank you, Multibilly.
It seems unlikely then that I have myeloma, as nonsecretory is very rare. I guess I will see with further testing, hopefully. I believe that serum test is an ESR, if memory serves. Thank you so much for your help and support. I truly appreciate it. I'm 60 miles north of New York City, just in case. I have dealt with Sloan Kettering for my husband. He had a carcinoid tumor that was removed successfully. I'm open to all suggestions, tho I doubt I have this now, I don't know.
It seems unlikely then that I have myeloma, as nonsecretory is very rare. I guess I will see with further testing, hopefully. I believe that serum test is an ESR, if memory serves. Thank you so much for your help and support. I truly appreciate it. I'm 60 miles north of New York City, just in case. I have dealt with Sloan Kettering for my husband. He had a carcinoid tumor that was removed successfully. I'm open to all suggestions, tho I doubt I have this now, I don't know.
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caligirrl13 - Name: hope
- Who do you know with myeloma?: myself possibly
- When were you/they diagnosed?: still being tested
- Age at diagnosis: 42
Re: Sick for a while, worried I may have multiple myeloma
I hope you get answers and feel better. From your story and labs, I would say the good news is, it is near 100% certain (in my opinion) you do not have myeloma.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: Sick for a while, worried I may have multiple myeloma
Thank you, doctor. This leaves me at a loss as to what is wrong with me. I appreciate your time and thoughts about my situation. I'm frustrated that my oncology hematologist is pursuing this, considering. Again, thank you.
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caligirrl13 - Name: hope
- Who do you know with myeloma?: myself possibly
- When were you/they diagnosed?: still being tested
- Age at diagnosis: 42
Re: Sick for a while, worried I may have multiple myeloma
Myoclonic jerking started a few days ago. Still waiting for the results of the 24-hour urine due to a screw up processing the first one. Survey showed nothing. Feel horrible and everything seems to be discounted because I'm not fitting a perfect profile. I thought Bence Jones weren't normal in healthy people. Frustrated.
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caligirrl13 - Name: hope
- Who do you know with myeloma?: myself possibly
- When were you/they diagnosed?: still being tested
- Age at diagnosis: 42
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