Hello. I am a new member and have not been diagnosed with mgus or multiple myeloma, so I kindly thank you for reading this and possibly giving me some insight.
I only have a question regarding recent bloodwork/testing...
Brief history: I am a 39 yr old female. I do not smoke. Very active with horses, gardening, and farming.
was referred to a neurologist by my family doctor for worsening symptoms of hand/feet tingling, severe fatigue, dizziness, hot flashes/night sweats (had hysterectomy in 2010), and minor pain (back,legs,hands,wrists, elbow, and base of skull). I do have a high pain tolerance. I also have recurrent ear infections and have developed nonallergic rhinitis.
Results of neuro testing:
An MRI of brain/cervical spine was negative.
Carpal tunnel was negative.
Lyme's was negative.
Thyroid function normal.
Glucose normal.
Dr. felt it was not Multiple Sclerosis due to neg MRI.
Bloodwork results showed an abnormal protein band 1 of 0.2 g/dl. I realize this is a VERY low amount.
Immunofixation results were "no monoclonal proteins present".
My neurologist sent me to a hematologist/oncologist for further testing due to the protein band.
Upon first meeting him 5 weeks ago, he told me that I have nothing to worry about and that everything is probably fine. I felt like I was wasting his time as he stated that "there are much sicker folks here than you that I see and you're actually a lucky gal." I realized what he said was quite true, but I felt horrible hearing this. I am shy and do not speak up often. I did more bloodwork and a 24H urine. I received a call a week later from a nurse that said "the urine was negative". I picked up copies of my bloodwork at the doctor's office and have an appointment for a re-check in 6 months. I have so many questions, but am afraid to bother this doctor with them until my re-check. That is why I have come here.
My question is:
Can a low protein band found in routine bloodwork be insignificant if it was not found on immunofixation? In other words....could it be a false positive?
Is this something that I should not worry about?
Thank you very much in advance for your time and insight.
Forums
Re: new member/m-spike question
The immunofixation is a very good test to identify monoclonal proteins. The only other test that may be helpful would be a free light chain assay. Was this performed?
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: new member/m-spike question
Thank you for replying to my question.
Yes, I did have an assay and the results seem to be in range:
kappa 11.4 mg/L
lambda 8.0 mg/L
k/l ratio 1.43
also had immunoglobulin labs:
IgA 81 mg/dL
IgG 1199 mg/dL
IgM 72 mg/dL
All seem to be in range, except maybe lower end for IgA.
No anemia or any other flags on bloodwork.
Calcium was slightly ^ at 10.0
Am I correct to assume that if light chain assay was normal and 24H urine was negative that I am NOT looking at MGUS/SMM/multiple myeloma?
I pray that everything is fine, but I cannot seem to understand why I am feeling worse by the day/week. I have always been very active and energetic....now I'm becoming a tired, achy person.
Thank you.
Yes, I did have an assay and the results seem to be in range:
kappa 11.4 mg/L
lambda 8.0 mg/L
k/l ratio 1.43
also had immunoglobulin labs:
IgA 81 mg/dL
IgG 1199 mg/dL
IgM 72 mg/dL
All seem to be in range, except maybe lower end for IgA.
No anemia or any other flags on bloodwork.
Calcium was slightly ^ at 10.0
Am I correct to assume that if light chain assay was normal and 24H urine was negative that I am NOT looking at MGUS/SMM/multiple myeloma?
I pray that everything is fine, but I cannot seem to understand why I am feeling worse by the day/week. I have always been very active and energetic....now I'm becoming a tired, achy person.
Thank you.
Re: new member/m-spike question
The kappa and lambda numbers, as well as ratio, appear to fall in normal range. 
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: new member/m-spike question
The labs are not consistent with monoclonal gammopathy or myeloma. I agree with the recommendation to repeat in 6 months.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: new member/m-spike question
I'm sorry to resurface again with another question, but I am again asking for any insight.
I was able to get online to print copies of my bloodwork/labs that were done with the hem/onc as mentioned in my earlier entry above. I wanted to save them in a folder until my next appointment in 6 months.
But then I noticed that in the section titled, "diagnosis", it states "monoclonal gammopathy of undetermined significance".
This has me perplexed. I did have an "abnormal protein band 1" found in blood at 0.2g/dL, but "no monoclonal proteins" found on immunofixation.
An assay was done and was normal.
I am not exactly sure about the results of the 24H urine. I did receive a call from a nurse that stated "the results are negative", which I thought meant everything was fine so that must mean the 0.2 protein was a false-positive or something of the sort.
The results I found online for the 24H urine are:
protein, total, mg/g creat 66mg/g
protein, mg/24H 95/mg/24H
Immunofixation, urine SEE NOTE (but there aren't any notes to see!)
total volume UPE 950mL/24H
albumin UPE 74%
alpha 1 globulin UPE 0%
alpha 2 globulin UPE 0%
beta globulin UPE 26%
gamma globulin UPE 0%
SPE interpretation SEE NOTE (again, no note to see)
creatinine 24H urine 1.44g/24H
There are no ranges listed for any of the labs. I am having a hard time finding what my numbers mean.
I am confused as to what makes it a diagnosis of MGUS if on my original bloodwork only a 0.2 abnormal protein was found, but then nothing on immunofixation or light chain assay....and the result of "negative" on my urine?
Can I please ask again if anyone notices anything here that I should be aware of?
I am having increasing pain in my bones/joints and extremely tired/fatigued. I also have embarassing bladder problems, itchy/prickly skin, tingling hands and feet. I am 39, female. These symptoms have been worsening over the last few years and are now effecting my daily life. I work with horses and it's becoming very hard to do my every day chores.
Also, should I have expected more from my hem/onc than only my first appointment where original tests were ordered? I never had a follow-up appointment to receive my results or to ask questions. I feel like I'm going through this blindly (except with help from Beacon...thank you). Now I read a diagnosis at the top of my lab results and quite frankly, I'm nervous.
Thank you again for any insight, and I do apologize if I'm making a mountain out of a mole hill....I know that many of you here are going through so much more difficulties with your disease. If questions regarding MGUS are not quite suitable for this forum as it pertains mostly to multiple myeloma, I would appreciate any reference to other sites. Thank you.
I was able to get online to print copies of my bloodwork/labs that were done with the hem/onc as mentioned in my earlier entry above. I wanted to save them in a folder until my next appointment in 6 months.
But then I noticed that in the section titled, "diagnosis", it states "monoclonal gammopathy of undetermined significance".
This has me perplexed. I did have an "abnormal protein band 1" found in blood at 0.2g/dL, but "no monoclonal proteins" found on immunofixation.
An assay was done and was normal.
I am not exactly sure about the results of the 24H urine. I did receive a call from a nurse that stated "the results are negative", which I thought meant everything was fine so that must mean the 0.2 protein was a false-positive or something of the sort.
The results I found online for the 24H urine are:
protein, total, mg/g creat 66mg/g
protein, mg/24H 95/mg/24H
Immunofixation, urine SEE NOTE (but there aren't any notes to see!)
total volume UPE 950mL/24H
albumin UPE 74%
alpha 1 globulin UPE 0%
alpha 2 globulin UPE 0%
beta globulin UPE 26%
gamma globulin UPE 0%
SPE interpretation SEE NOTE (again, no note to see)
creatinine 24H urine 1.44g/24H
There are no ranges listed for any of the labs. I am having a hard time finding what my numbers mean.
I am confused as to what makes it a diagnosis of MGUS if on my original bloodwork only a 0.2 abnormal protein was found, but then nothing on immunofixation or light chain assay....and the result of "negative" on my urine?
Can I please ask again if anyone notices anything here that I should be aware of?
I am having increasing pain in my bones/joints and extremely tired/fatigued. I also have embarassing bladder problems, itchy/prickly skin, tingling hands and feet. I am 39, female. These symptoms have been worsening over the last few years and are now effecting my daily life. I work with horses and it's becoming very hard to do my every day chores.
Also, should I have expected more from my hem/onc than only my first appointment where original tests were ordered? I never had a follow-up appointment to receive my results or to ask questions. I feel like I'm going through this blindly (except with help from Beacon...thank you). Now I read a diagnosis at the top of my lab results and quite frankly, I'm nervous.
Thank you again for any insight, and I do apologize if I'm making a mountain out of a mole hill....I know that many of you here are going through so much more difficulties with your disease. If questions regarding MGUS are not quite suitable for this forum as it pertains mostly to multiple myeloma, I would appreciate any reference to other sites. Thank you.
Re: new member/m-spike question
I would still greatly appreciate any reply to my previous post if anyone has had a similar situation.
I called the hem/onc on Tuesday to inquire about my increasing symptoms and to make an appointment. where I could ask my questions, etc. I was told that my "symptoms are not from mgus or anything that we did here" and to "follow up with PCP".
I then called my PCP office and was told that they could not do anything as it is a condition that the hem/onc should do follow-up on.
?????
I am not big on going to the doctor, so I'm almost ready to call the whole thing off.
I have 2 scenarios that concern me the most:
1) I've been diagnosed with MGUS, but do not know or have not been told the "kind". Is this even possible? Can you have an elevated protein/m-spike without knowing where or which one it is? The doctor here on Beacon that kindly responded to one of my earlier posts stated that my labs do not appear to be mgus or multiple myeloma. Does this probably mean that something else entirely may be going on, and that I really do not have a true m-spike that would point to mgus or related?
2) If it is indeed mgus as my diagnosis states, and I have symptoms (bone/joint pain, ^calcium...), shouldn't the hem/onc want to do more testing other than blood & urine studies? I have read about non-secretory and oligosecretory?
Thank you for your time.
I called the hem/onc on Tuesday to inquire about my increasing symptoms and to make an appointment. where I could ask my questions, etc. I was told that my "symptoms are not from mgus or anything that we did here" and to "follow up with PCP".
I then called my PCP office and was told that they could not do anything as it is a condition that the hem/onc should do follow-up on.
?????
I am not big on going to the doctor, so I'm almost ready to call the whole thing off.
I have 2 scenarios that concern me the most:
1) I've been diagnosed with MGUS, but do not know or have not been told the "kind". Is this even possible? Can you have an elevated protein/m-spike without knowing where or which one it is? The doctor here on Beacon that kindly responded to one of my earlier posts stated that my labs do not appear to be mgus or multiple myeloma. Does this probably mean that something else entirely may be going on, and that I really do not have a true m-spike that would point to mgus or related?
2) If it is indeed mgus as my diagnosis states, and I have symptoms (bone/joint pain, ^calcium...), shouldn't the hem/onc want to do more testing other than blood & urine studies? I have read about non-secretory and oligosecretory?
Thank you for your time.
Re: new member/m-spike question
> But then I noticed that in the section titled, "diagnosis", it
> states "monoclonal gammopathy of undetermined significance".
> This has me perplexed.
I bet this is just the suspicion that the doc originally had before he saw all the most recent results. My original paperwork had me diagnosed as MGUS based on my doc's initial hunch , but it turned out I was smoldering after later tests were performed.
I'd just call up the doc's office and ask to speak to him to clarify all this.
> states "monoclonal gammopathy of undetermined significance".
> This has me perplexed.
I bet this is just the suspicion that the doc originally had before he saw all the most recent results. My original paperwork had me diagnosed as MGUS based on my doc's initial hunch , but it turned out I was smoldering after later tests were performed.
I'd just call up the doc's office and ask to speak to him to clarify all this.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: new member/m-spike question
Thank you Multibilly for your reply.
When I called the hem/onc office, I did say that I'm concerned about the diagnosis since it was never discussed and that I now have questions about my symptoms. I was told that "he had to put something" and then she went on to explain that mgus will not cause symptoms and to follow up with PCP.
So confused.
When I called the hem/onc office, I did say that I'm concerned about the diagnosis since it was never discussed and that I now have questions about my symptoms. I was told that "he had to put something" and then she went on to explain that mgus will not cause symptoms and to follow up with PCP.
So confused.
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