Hi,
I have now been seen by 4 different haematologists/oncologists in the last 4 months. One thing which surprised & distressed me was that each doctor gave me a different diagnosis! Two claimed that I had multiple myeloma, while the other 2 assured me that it was MGUS [monoclonal gammopathy of undetermined significance]!
Although I tried to ask several questions based on my blood test report, yet none of these doctors gave me any definite answers. This I suspect is due to that the doctors think we, the patients, are not capable of understanding, hence tell things strictly only on a need to know basis! So much for the "Freedom of Information" act!
I am so confused! here below are some of the very recent test results;
B-hemoglobin 13.4g/100ml
B-Tromocytes 160/10**/lt*
S-Calcium Corr 2.38/mmol/lt*
S-Creatinin 95/umol
Total Protain 82/g/lt*
Immunoglobulin-G 28.8g/lt*
Immunoglobulin-A 0.4g/lt*
Immunoglobulin-M 0.2g/lt*
Free light Cappa chains - 900mg/lt*
Free light Lamda chains - 12mg/lt*
S-Ratio Cappa/Lamda - 75
S-Glucose - 5.6mmol/lt*
Please note: */Lt
I just need to put my mind at ease, since NOT KNOWING what it is is so stressful, as many of you may have experienced. I also need to be definite so that I can follow a strict diet.
Finally are "corn" products, such as biscuits, bread & red grapes ok to eat? I ask this because I am a kidney transplant recipient.
Any advice or help would be of immense help to me to ease my anxiety at the moment.
Thank you All.
Forums
9 posts
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Re: Have I got MGUS or multiple myeloma?
Well MGUS can be a cause of multiple myeloma. Some people have MGUS and it never develops into multiple myeloma but it is a definite known cause.
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Bobvancleef38 - Who do you know with myeloma?: My father
- When were you/they diagnosed?: 1994
- Age at diagnosis: 40
Re: Have I got MGUS or multiple myeloma?
Hi Aurat51,
Sorry to hear about the challenges you're facing with your diagnosis. I think the best way to interpret what you've heard so far, though, is that your case is one that is borderline. Part of the reason for that, I suspect, is that it may not be easy to interpret your kidney-related results, which can play an important role in the diagnosis of multiple myeloma.
A good summary of the criteria for telling the difference between multiple myeloma and the diseases that often come before it (MGUS and smoldering myeloma) is in the "diagnostic criteria" section of the Wikipedia article on multiple myeloma,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Based on those criteria and the information you've provided, and ignoring the kidney-related results (given that you have a transplant, which make them difficult for me to interpret), it looks you are close to satisfying some of the criteria for multiple myeloma.
However, you are missing some key information. Did you have a bone marrow biopsy and, if so, what was the plasma cell percentage they found in the bone marrow?
Also, did you have xrays done to look for bone damage?
Both of these tests are important parts of properly diagnosing myeloma.
Sorry to hear about the challenges you're facing with your diagnosis. I think the best way to interpret what you've heard so far, though, is that your case is one that is borderline. Part of the reason for that, I suspect, is that it may not be easy to interpret your kidney-related results, which can play an important role in the diagnosis of multiple myeloma.
A good summary of the criteria for telling the difference between multiple myeloma and the diseases that often come before it (MGUS and smoldering myeloma) is in the "diagnostic criteria" section of the Wikipedia article on multiple myeloma,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Based on those criteria and the information you've provided, and ignoring the kidney-related results (given that you have a transplant, which make them difficult for me to interpret), it looks you are close to satisfying some of the criteria for multiple myeloma.
However, you are missing some key information. Did you have a bone marrow biopsy and, if so, what was the plasma cell percentage they found in the bone marrow?
Also, did you have xrays done to look for bone damage?
Both of these tests are important parts of properly diagnosing myeloma.
Re: Have I got MGUS or multiple myeloma?
I know it doesn't do anything to calm the anxiety, but maybe you're borderline and you will have to wait and see if it develops further. Have the 2 doctors who diagnosed multiple myeloma offered a treatment regimen?
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Have I got MGUS or multiple myeloma?
Thank you all for for taking the time to answer my question. Yes, I did have bone marrow biopsy & a CT/xray(?) scan. The oncologist assured me that there was nothing abnormal or alarming in either test!
However, I've had severe pain in my left elbow joint for the past 3-4 years, yet all my requests for a test have gone unheeded so far! The results of 04.11.2013 were from the bone marrow biopsy.
Here is a "summary" of the diagnosis given in the report;
Date:
14.01.14 - pH adjusted ionised calcium >= 1.25 & PTH > 8.5pmol/lt; hyperparathyroidism as possible cause suspected.
20.12.13 - Conclusion:Monoclonal gammapathy, probably myelomatosis
27.11.13 - Same amount of serum concentration as in 04.11.13
04.11.13 - Evidence of increased IgG cappa level to ca.22g/lt & a considerable increase in kappa chains in the serum concentration.(Bence Jones protein?) in bone marrow. Increased concentration of protain in urine & 70%-80% this is (Bence-Jones) linked to lite kappa chains.
-------- No treatment or tests were carried out during the ensuing years! (2004-2013)
19.11.04 - The last examination (prior to kidney transplant) showed a monclonal component type IgG-kappa & elevated level of increased amount of free light immunoglobulin chains in the serum.
I am so sorry to inundate you all with probably so much irrelevant information, but sincerely hope, that this would be of some help to knowledgable souls out there could throw more light on this.
Thank you.
However, I've had severe pain in my left elbow joint for the past 3-4 years, yet all my requests for a test have gone unheeded so far! The results of 04.11.2013 were from the bone marrow biopsy.
Here is a "summary" of the diagnosis given in the report;
Date:
14.01.14 - pH adjusted ionised calcium >= 1.25 & PTH > 8.5pmol/lt; hyperparathyroidism as possible cause suspected.
20.12.13 - Conclusion:Monoclonal gammapathy, probably myelomatosis
27.11.13 - Same amount of serum concentration as in 04.11.13
04.11.13 - Evidence of increased IgG cappa level to ca.22g/lt & a considerable increase in kappa chains in the serum concentration.(Bence Jones protein?) in bone marrow. Increased concentration of protain in urine & 70%-80% this is (Bence-Jones) linked to lite kappa chains.
-------- No treatment or tests were carried out during the ensuing years! (2004-2013)
19.11.04 - The last examination (prior to kidney transplant) showed a monclonal component type IgG-kappa & elevated level of increased amount of free light immunoglobulin chains in the serum.
I am so sorry to inundate you all with probably so much irrelevant information, but sincerely hope, that this would be of some help to knowledgable souls out there could throw more light on this.
Thank you.
Re: Have I got MGUS or multiple myeloma?
Thank you Terry H, for your very informative post I really appreciate the concern you & all others have shown. I actually don't know exactly how the "plasma cell percentage" is given in the test report I'm sure it's there if I only knew what to look for! Would you mind pointing me as to what I should be looking for, such as, S.ASAT= 19U/lt, S-ALAT=18U/lt & so on from test report per 25.03.2014?
In one report it gives probable cause as myelomatosis (MGUS), while in another report it seems to be suggesting hyperthyroidism as another likely possibility!
Thanks
In one report it gives probable cause as myelomatosis (MGUS), while in another report it seems to be suggesting hyperthyroidism as another likely possibility!
Thanks
Re: Have I got MGUS or multiple myeloma?
Wayne K wrote: "I know it doesn't do anything to calm the anxiety, but maybe you're borderline and you will have to wait and see if it develops further. Have the 2 doctors who diagnosed multiple myeloma offered a treatment regimen?"
No, none whatsoever, to the contrary, they claimed it wasn't "so serious" to warrant any treatment now!
Nothing surprises me anymore, since my former GP consistently assured me in 10 years (1988-1998), that my persistent headaches, recurring hemorrhoids & very high blood pressure were nothing more than a passing phase. He didn't prescribe any medicine or even take a single urine test until I was diagnosed with advanced renal failure in 1999 by another doctor!
No, none whatsoever, to the contrary, they claimed it wasn't "so serious" to warrant any treatment now!
Nothing surprises me anymore, since my former GP consistently assured me in 10 years (1988-1998), that my persistent headaches, recurring hemorrhoids & very high blood pressure were nothing more than a passing phase. He didn't prescribe any medicine or even take a single urine test until I was diagnosed with advanced renal failure in 1999 by another doctor!
Re: Have I got MGUS or multiple myeloma?
Hello from gray Seattle,
I would request a copy of your the bone marrow biopsy report from your doctor. There will be a summary or conclusion on the report and that will tell you the percentage of plasma cells in the marrow. Because you have elevated free light chains in the blood, I am concerned about possible risk to the kidney transplant. Some patients with MGUS or smoldering myeloma and a kidney transplant may need to be treated to protect the transplanted kidney.
In terms of your plasma cell disorder, it is OK to eat "corn" products, such as biscuits, bread & red grapes. I would ask your nephrologist if he/she has any problems with these foods and your transplanted kidney.
I would request a copy of your the bone marrow biopsy report from your doctor. There will be a summary or conclusion on the report and that will tell you the percentage of plasma cells in the marrow. Because you have elevated free light chains in the blood, I am concerned about possible risk to the kidney transplant. Some patients with MGUS or smoldering myeloma and a kidney transplant may need to be treated to protect the transplanted kidney.
In terms of your plasma cell disorder, it is OK to eat "corn" products, such as biscuits, bread & red grapes. I would ask your nephrologist if he/she has any problems with these foods and your transplanted kidney.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Have I got MGUS or multiple myeloma?
Thank you so much Dr.Libby!
I will certainly ask for the bone marrow biopsy report. I will also ask my nephrologist with regard to precautions or treatment to protect my transplanted kidney & the type of diet I should follow.
On my 1st blood test report probable " parahyperthytroidism" is also mentioned. I also have some of if not all the symptoms such as:
Persistant bone pain in one elbow
Insomnia or unable to sleep
Extreme tiredness or fatigue
Thinning hair
Rash in palm of my hand
Palpitation
Does parahyperthytroidism give similar symptoms as above? Should I request my oncologist to do further tests for this as well?
Thank you.
I will certainly ask for the bone marrow biopsy report. I will also ask my nephrologist with regard to precautions or treatment to protect my transplanted kidney & the type of diet I should follow.
On my 1st blood test report probable " parahyperthytroidism" is also mentioned. I also have some of if not all the symptoms such as:
Persistant bone pain in one elbow
Insomnia or unable to sleep
Extreme tiredness or fatigue
Thinning hair
Rash in palm of my hand
Palpitation
Does parahyperthytroidism give similar symptoms as above? Should I request my oncologist to do further tests for this as well?
Thank you.
9 posts
• Page 1 of 1