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

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Multibilly on Sun Nov 27, 2016 7:44 pm

Hi Buskerskat,

Just to be clear, the "M-level" your refer to seems to be your IgM level (IgM is how you ought to refer to it since "M-level" tends to convey a different thing known as your M-spike).

All of your immunoglobulin levels will normally fluctuate quite a bit over time, so you really want to look at the trends over time. You don't say what your normal IgM reference range is, but my lab's normal range for IgM is typically on the order of 0.2 g/L to 1.7 g/L, so your IgM level does seems like it could be fairly elevated to begin with. I didn't realize until just now that you might have IgM-type MGUS (your serum immunofixation results would confirm what type of monoclonal protein you have). If it is IgM-type MGUS, that is a rarer beast than other types of MGUS such as IgG and IgA-type MGUS. I always like to point IgM-monclonal-protein patients to this article since there are some special things to watch out for with an IgM monoclonal protein disorder:

J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein," The Hematologist, Sep 15, 2014 (full text of article)

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Buskerscat on Mon Nov 28, 2016 1:12 am

Multibilly,

Thank you for again taking the time to reply, for the link to the article, and for the clarification on the M-spike / IgM. I was getting confused I think with all the 'M' business.

This is what it says:

IgL 9.7 g/L (6.0-16.0)
IgA 1.38 g/L (0.8 - 2.8)
IgM 3.03 g/L (0.5-1.9)

Then 10 days later:

IgL 10.7 g/L (6-16)
IgA 1.50 g/L (0.8-2.8)
IgM 3.37 g/L (0.5-1.9)

Just to clarify though, having scoured all my results now, the IgM is raised in both tests, however, the SPEP result says 'serum protein electrophoresis profile shows no evidence of obvious monoclonal protein bands', could this mean that it is not even MGUS after all?

I cannot see any reference to the other test that you mentioned.

And just one more question, I have been trying to understand my results and the link you sent refers to CRAB testing, one of my results says 'urine creatinine level 31.4 mmol/L [2.55-20.00] and urine protein/creatinine ration 5 mg/mmol (there is no reference what it should be) - does this refer to the 'R'?

Another that is very high is serum amylase level 111 u/L [28.0-100].

Thank you again. I have really appreciated the knowledge and quick responses to my rather clueless questions - until I can get back to the doctor - who is likely to fob me off unless I can explain myself and what I'd like investigating further. I have been stressing a bit more as I have a lot of pain in my back/abdomen.

Buskerscat

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Multibilly on Mon Nov 28, 2016 8:38 am

Buskerscat,

You want to go back and see if your doctor ran a serum immunofixation (IFE) test. This test is better than an SPEP at detecting the presence of monoclonal proteins and it has the additional benefit of telling you which of your specific immunoglobulins might have a monoclonal makeup. As I said in my first post, you should also have a serum free light chain test to get a more complete picture of what is going on. But the fact that your SPEP couldn't measure any monoclonal protein might indeed suggest that you aren't looking at MGUS and that something else may be responsible for raising your IgM level. But only a doctor can make that call.

The "R" (renal insufficiency) in "CRAB" relies on looking at one's serum creatinine level or urine creatinine clearance value. You are considered to have renal insufficiency by myeloma standards if your urine creatinine clearance is <40 mL per minute or you have a serum creatinine level >177µmol/L (>2mg/dL). You can find your serum creatinine level on your metabolic panel. Your creatinine clearance would be found in the results of a 24-hour UPEP, assuming you did a 24-hour UPEP (where you collect your pee for 24 hours) along with your other tests.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by torifrog on Tue Nov 29, 2016 12:26 am

Hi again buskerscat.

A high ACR (albumin/creatinine ratio, or protein/creatinine ratio) is also found in undiagnosed Type 2 diabetics quite frequently. I'm adding some links below which explain this a bit further.

I hate to be harping on about diabetes, but I have a pretty strong suspicion that's what might be happening here, and delay is not your best bet. Please see your GP as soon as you can to be checked.

References:

Roett, MA, et al, "Diabetic Nephropathy – The Family Physician's Role", American Family Physician, May 2012 (full text of article)
"Microalbuminuria" (Wikipedia article)

torifrog
Name: Tori
Who do you know with myeloma?: Myself - MGUS
When were you/they diagnosed?: Sept 1 2016
Age at diagnosis: 51

Re: Diagnosed with MGUS - but doesn't explain my symptom?

by Buskerscat on Tue Nov 29, 2016 10:54 am

Thanks again for your replies.

Multibilly, I don't see any reference to a serum immunofixation test or serum free light chain test so I will mention this to my doctor. The urine sample I gave was just a normal one, not taken over 24 hours.

Torifrog, I have an appointment on Thursday and will be asking for a diabetes check. Can diabetes raise your IgM level?

So, just to clarify, the fact my urine creatinine levels are high could be enough for me to have further testing with regards to the MGUS and/or diabetes?

Sorry for the constant questions, am concerned that if I don't appear to know what I am talking about I will be fobbed off for another 3 months. I need to resolve these issues and am panicking slightly that they may have missed something. My grandfather died of myeloma and I have a family history of diabetes so hopefully this may help to be taken seriously.

Buskerscat

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by Multibilly on Tue Nov 29, 2016 11:24 am

Buskerscat,

I might suggest taking one thing at time and getting the question of diabetes off the table since it might explain a lot of your symptoms.

As far as your elevated urine creatinine level is concerned, I really have no experience with random urine sample test results. But I would go back and look at your comprehensive metabolic panel test and see how your serum creatinine, BUN and eGFR values are doing to get an idea if you might be experiencing any renal issues. But be clear that diabetes can absolutely cause renal impairment.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by torifrog on Wed Nov 30, 2016 12:20 am

buskerscat,

As far as I'm aware, diabetes alone has no effect on immunoglobulin levels, but things are often found coincidentally. I agree with Multibilly – get the diabetes question sorted out, and then pursue any other issues.

Wishing you the best.

torifrog
Name: Tori
Who do you know with myeloma?: Myself - MGUS
When were you/they diagnosed?: Sept 1 2016
Age at diagnosis: 51

Re: Diagnosed with MGUS - but doesn't explain my symptoms

by misswoosie on Thu Dec 15, 2016 8:58 am

Hi,

I'm not sure how much further you've got with things, but I thought it was worth mentioning that amylase is an enzyme related to gall bladder and pancreatic function. Additionally, problems with the pancreas can lead to signs and symptoms of diabetes, as the pancreas produces insulin.

One of the other things that can lead to raised amylase is problems with the gallbladder – for example, gallstones.

You say you suffer from upper abdominal pain. Does this vary in relation to meals at all?

Gallbladder problems can also frequently cause diarrhoea and lighter coloured stools (yellowy) that float and are difficult to flush away.

Do you know if your liver function blood tests are normal? These would include ALT, bilirubin, etc.

misswoosie
Name: Misswoosie
Who do you know with myeloma?: me, MGUS
When were you/they diagnosed?: Nov 2016
Age at diagnosis: 53

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