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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Is it MGUS?

by Edit on Wed Apr 11, 2012 12:04 pm

Hi everyone, I am new to this site and a bit confused.
I am 40 years old and I have a history of back pain, pelvic tilt-lumbar scoliosis, and lately was diagnosed with Syringomyelia (cyst in the spinal cord 2mm from T6-T12). I also have neuropathic pain in my upper back-shoulders and was on Amitriptyline and Cymbalta medication.
Two weeks ago I had some blood and urine tests done and I am very confused about my results. My family doctor is not concerned at all and she did not want me to repeat the tests as she is telling me that my pain is coming from the syrinx and nothing else.
Could you please, if anyone would know how to read my test result as it is not clear for me and I can not get any help from my GP :
random urine test:
GAMMOPATHY SCREEN R U
PROTEIN URINE 0.36
Interpretation
No Free Light Chains observed by Immunofixation.
Chemical Urinalysis
Protein 0.3A -should be negativ
My Protein Electrophoresis is all good, total protein is 78 and my Albumin is little high at 55.
My ANA is also positive 1.60 Hemagenous pattern but all other rheumatoid tests are negativ.
Could anyone tell me if the protein found in Gammopathy Screen is actually M protein and does it mean that I have MGUS? My latest MRI was done in October but all they are looking for is the Syrinx and but can clearly see a low signal lesion on one of my vertebarae and it is bigger than it was a year ago.
Thank you for any suggestions.
Edit.

Edit
Name: Edit
Who do you know with myeloma?: nobody
When were you/they diagnosed?: not diagnosed yet
Age at diagnosis: 40

Re: Is it MGUS?

by Art on Wed Apr 11, 2012 1:13 pm

Take a look at this link

http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria

It might help. I would say a bone marrow biopsy might be in order. The criteria on the web page is pretty clear.

Good Luck
Art

Art
Name: Art
Who do you know with myeloma?: Self
When were you/they diagnosed?: 12/2011
Age at diagnosis: 40

Re: Is it MGUS?

by Edit on Thu Apr 12, 2012 7:53 pm

Thank you Art for your answer.
Edit.

Edit
Name: Edit
Who do you know with myeloma?: nobody
When were you/they diagnosed?: not diagnosed yet
Age at diagnosis: 40

Re: Is it MGUS?

by Edit on Thu Apr 12, 2012 10:07 pm

Sorry to bother again, but now I am even more confused :-( I still don`t know what kind of protein I have in my urine under the Gammopathy Screen, is it M protein or Bence Jones? Because I know that my GP asked for Bence Jones protein test but she did not specify the 24h. test, so I had just a random urine test. I am sooo confused... I am sorry but I am desperate for answers and some peace of mind, can anyone tell?
Thank you,
Edit.

Edit
Name: Edit
Who do you know with myeloma?: nobody
When were you/they diagnosed?: not diagnosed yet
Age at diagnosis: 40

Re: Is it MGUS?

by Dr. Edward Libby on Sat Apr 14, 2012 11:57 am

Hello from sunny Seattle !...........today at least

The laboratory tests you have posted are not completely clear to me. To determine if you have MGUS the following tests should be done. What doctors are looking for is an "m-spike" (monoclonal gammopathy) or an increase in the secretion of a protein by abnormal plasma cells.
#1. Serum protein electrophoresis (SPEP) - it sounds like your SPEP did not have an m-spike so it is normal.
#2. 24 hour urine for Bence Jones proteins (light chains)- This test is often called a UPEP. A spot urine or random urine (meaning you urinate in a cup while you are at the doctors office) is not adequate. If your GP is concerned at all about MGUS, SMM or myeloma your urine must be collected for a full 24 hours (the patient urinates in a plastic jug for a full 24 hours at home) and then analyzed in the laboratory. It looks like your urine test did not have light chains althuogh there was some of protein in the urine. It is common to see some protein in urine but to assess if amount of protein is normal or abnormal a 24 hour urine test for Bence Jones proteins and albumen must be performed. Unfortunately a random urine sample is not adequate to test for MGUS, SMM or myeloma.
#3. Serum free light chain analysis- in large part this test is replacing the 24 hour urine test.

One does not have to have all three tests but the SPEP is mandatory. A patient can have either a 24 hour urine for Bence Jones proteins (UPEP) or a serum free light chain test (Freelight). For screening purposes it is not necessary to have both the 24 hour urine and the serum free light chain testing.
Best of luck with all of this!

Dr. Edward Libby
Name: Edward Libby, M.D.
Beacon Medical Advisor

Re: Is it MGUS?

by Edit on Sat Apr 14, 2012 1:16 pm

Thank you Dr Libby for your clear answer, thank you so much!!! I will go and ask my GP to do the correct test for me.
Edit.

Edit
Name: Edit
Who do you know with myeloma?: nobody
When were you/they diagnosed?: not diagnosed yet
Age at diagnosis: 40

Re: Is it MGUS?

by Edit on Tue Sep 04, 2012 4:49 pm

Hi everyone,
could you please help me again to understand these new test results as I am lost...
I asked for the Bence Jones 24h urine test and was refused many many times by my Gp. Last month I was finally able to do some lab work in Europe. Today I received the results via email and I am more confused than ever :-(

IgG level: 1091mg/dl normal: 700-1600
IgM level 269.7mg/dl normal: 40-230
IgE level 6.59 Ul/mL
Serum Electrophoresis with Immunofixation:
Serum Monoclonal band IgG, IgA, IgM: absent.
Serum Monoclonal chain Kappa and Lambda: absent

Lambda free light chain urine: 3.88 mg/l normal: < 3.9
Kappa free light chain in urine 6.66 mg/l normal: < 7.1

Lambda free light chain in serum: 6.3 mg/l normal: 5.7-26.3
Kappa free light chain in serum: 2.7 mg/l normal: 0.26-1.65

Kappa/Lambda ratio 0.4 Normal: 0.26-1.65

Any feedback is much appreciated and thank you in advance !!!

Edit
Name: Edit
Who do you know with myeloma?: nobody
When were you/they diagnosed?: not diagnosed yet
Age at diagnosis: 40


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