[catsunami]

Suspected MGUS

by catsunami on Sat Jan 30, 2016 5:01 pm

Hi everyone,

I am 25, and during testing for something else (optic neuritis causes), my electrophoresis came back abnormal with elevated proteins and a monoclonal IgG kappa.

The total protein was 8.1 g/dL (normal upper bound was 8.0 g/dL), immunoglobulin was 1.61 g/dL (normal upper bound was 1.60 g/dL).

The M-spike was 0.68 g/dL. Everything else (CBC) was normal.

My doctor then gave me a 24-hour urine protein referral, which I did (it was gross). This came back normal (no monoclonal protein detected, unremarkable), no Bence Jones proteins detected.

He doesn't believe this, unfortunately. He said that there should have been something there. So he gave me a referral to a serum light chain assay, which I will do this week (I just saw him like an hour ago).

This is sort of freaking me out. He said that the **only** thing that could be causing this is MGUS or even multiple myeloma He then said that he has never seen this in someone so young, which just added to the stress, honestly.

I have no bone problems (I had several xrays done very recently on chest and legs) that I'm aware of, no kidney issues, and in general this has all been quite the surprise.

Since my eye is not getting much better, I will have to have a spinal tap done in 2 weeks to check for infection. Who knows what this will turn up. For what its worth, I had an MRI on the head and it showed tiny lesions (like dots), but the neurologist thinks they're from migraines, not multiple sclerosis.

So I'm not sure what to do with myself. I know the M-spike was quite low (on the grand scheme of things), and I am hoping that lab made a mistake (which is a stupid thing to hope for, but nonetheless), but of course in the back of my mind I'm constantly thinking about this cancer thing.

Any thoughts on this? Suggestions?

[Cheryl G]

Re: Suspected MGUS

by Cheryl G on Sat Jan 30, 2016 6:03 pm

Welcome to the forum, catsunami,

I'm sorry that you're having to go through all of this right now, but it sounds like your doctors are doing the right tests.

The serum protein electrophoresis (SPEP), serum immunofixation electrophoresis (sIFE, or IFX), and serum free light chain tests are key initial tests to determine if you have some sort of plasma cell disorder.

The SPEP tells you the level of your M-spike (monoclonal protein, abnormal protein, paraprotein). In your case, you say that it measured 0.68 g/dL. You should double check to make sure those units are correct (g/dL are common units in the U.S., g/L are common in other countries).

The serum immunofixation electrophoresis doesn't tell you how much of a monoclonal protein is in your blood. It just tells you whether or not there is, in fact, a monoclonal protein and, if so, what type it is (IgG, IgA, etc., and lambda or kappa).

If, in fact, you have a monoclonal protein in your blood, then the next step is to determine whether it is being caused by disease that is doing damage to your body -- i.e., your bones, your kidneys, or by depressing your blood cell counts severely. This is done by checking your bones through xrays, MRIs, or PET/CT scans, and by looking at your blood test results for your calcium levels, measures of kidney health like your creatinine level, and signs of anemia (such as abnormally low hemoglobin levels).

If any of these measures suggest the disease may be doing damage to your body, then your doctors will probably want to do a bone marrow biopsy.

Whether or not treatment is necessary will depend on whether the tests I just described lead to a diagnosis of multiple myeloma, which is almost always actively treated, versus smoldering multiple myeloma or MGUS (which are not generally treated).

Of course, your doctors will also be trying to determine if other diseases -- besides MGUS or multiple myeloma -- are the source of your M-spike (if it exists).

It sounds like you've already done a lot of background reading, which is great. If you haven't already read it, however, this article may be useful to you:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014

It describes the latest criteria for a diagnosis of multiple myeloma, smoldering multiple myeloma, MGUS, and solitary plasmacytoma.

I hope this helps some. Let us know if you have more questions, and keep us posted on what you find out.

Good luck!

[Multibilly]

Re: Suspected MGUS

by Multibilly on Sat Jan 30, 2016 6:18 pm

Hi Catsunami,

Welcome to the forum. But sorry you find yourself here under these circumstances. Cheryl provided some really good insights.

In general, the only thing that can cause an M-spike is some sort of plasma cell dyscrasia (disorder). If it turns out to be a plasma cell disorder, MGUS is the most common culprit.

A 24-hour urine electrophoresis test won't always reveal the presence of Bence-Jones proteins (which is just another name for free light chains when they are found in the urine), even though an M-spike may be found in one's serum and who's presence has been further validated via a serum electrophoresis test.

Getting a serum free light chain assay would be another good test to do, so your doc was right on suggesting this as a follow up test. But you should also be getting a quantified immunoglobulin test, which measures the individual levels of your IgG, IgA and IgM.

The thing to keep in mind with MGUS is that the risk of MGUS evolving into multiple myeloma is only about 1-1.5% per year and most people go through life none the worse for having MGUS.

It sounds like you have a pretty capable doc, but most folks on this forum would suggest seeking out a multiple myeloma specialist that lives and breathes plasma cell disorders on a daily basis. If you let us know what city you are in, folks can make some recommendations on where to find these specialists.

Try not to freak out too much and keep in mind that MGUS can often times not amount to anything serious. Hope this helps a bit and take care.

[catsunami]

Re: Suspected MGUS

by catsunami on Sat Jan 30, 2016 7:40 pm

Thank you, Cheryl and Multibilly, for all of the information. I really appreciate it! The units are definitely g/dL (because they were in g/L originally and I converted them).

I realize the progression rate is fairly low per year, but given my age I feel like the 50-75% chance of progression over 50 years is quite high Of course, by that time there may actually be a cure. Even so, there is a chance I would get it next year (or this year ...), which is the part that sends me into panic mode.

I will mention the quantification of immunoglobulin types next time I see my doctor, I think for now I'll just do the light chain assay and see how that goes.

As far as I know (the results were normal), my calcium and WBC levels are all normal. They must have done like 20 tests using my blood, and everything except the protein electrophoresis was OK.

I live in Canada (Calgary), so I don't think I really have a choice in specialists, because I have to be referred by my primary doctor or another specialist. I suppose if my GP thinks this is important enough, he will probably refer.

What is your opinion on taking turmeric? I am thinking of taking some supplements just as a proactive measure.

I will do the assay on Monday, so he will probably call me on Wednesday. I'll let you know what that shows.

Anyway thanks again for your advice.

[Little Monkey]

Re: Suspected MGUS

by Little Monkey on Sat Jan 30, 2016 9:14 pm

Catsunami,

Calgary has among most everything when it comes to medical care, some of the best in the country. You will likely be referred to a haematologist for blood tests / check up every few months if you do have MGUS. Further, if MGUS is confirmed, at some point you will likely be given a referral to a myeloma specialist at SACRI / Tom Baker to give your haematologist some guidance.

We have another member who lives in Calgary and may be able to give better information than I have.

[Nancy Shamanna]

Re: Suspected MGUS

by Nancy Shamanna on Sat Jan 30, 2016 11:06 pm

Hi Catsunami,

Little Monkey is correct in saying that we have good health care in Calgary. I would think that your FP would refer you to a hematologist for MGUS, or a hematological oncologist, OR a myeloma specialist for myeloma. There are all of those specialists here. Some have clinics at more than one hospital too, e.g. at the Tom Baker plus the Peter Lougheed, for example. You might be referred through a system called 'central triage', where they try to match up patients to specialists with the minimum of delay also. Hope that helps!

[Cheryl G]

Re: Suspected MGUS

by Cheryl G on Sun Jan 31, 2016 12:24 am

Hi catsunami,

I have just a few comments to add to the very helpful advice you've already gotten.

You say that you converted your M-spike to g/dL. Was the original measurement 6.8 g/L?

Also, I wonder if you already have the quantified immunoglobulin results that Multibilly (wisely) suggested you get. You said that your

"immunoglobulin was 1.61 g/dL (normal upper bound was 1.60 g/dL)"

That sounds like the result for your IgG, not some general immunoglobulin level, and that makes me wonder if you also got IgA and IgM results. You might want to check.

Take care,
Cheryl

[catsunami]

Re: Suspected MGUS

by catsunami on Sun Jan 31, 2016 4:30 pm

Thanks guys. I hope it's not too far, since I work in Cochrane and going to Calgary for doctor's appointments is really using up a lot of time (which I then have to work off). My neuro is in Rockyview and basically one appointment is 1/2 work day. Foothills would be alright though. So far I have not been referred anywhere, because I suppose they're going to retest everything first.

Cheryl, I think it was just the gamma globulin. The report just gave that level (16.1 g/L), the "monoclonal 1" which was 6.8 g/L (or 0.68 g/dL), overall protein (which was the 81 g/L instead of 80 g/L it should have been, though in other sources I see max for protein set to 83 g/L) and then things like albumin and whatnot (those values I do not remember, I will have to go pick up a copy from my doctor) that were all normal. There was a comment about monoclonal IgG kappa in the results.

Anyway, the light chain assay will clear some more things up.

[Cheryl G]

Re: Suspected MGUS

by Cheryl G on Mon Feb 01, 2016 11:01 am

Good luck with your test today, Catsunami.

It sounds like the 16.1 g/L value is the gamma globulin level from your serum protein electrophoresis (SPEP). I had never noticed until this discussion that the upper bound of the reference range for gamma globulin is very similar to the upper bound of the reference range for IgG. The similarity is what got me wondering if you had quoted the level of IgG from one of your tests, rather than your gamma globulin level. Sorry for the confusion.

[Little Monkey]

Re: Suspected MGUS

by Little Monkey on Mon Feb 01, 2016 2:53 pm

Remember, you have a right to leave from work to attend a medical appointment such as a haematologist if the appointment cannot be reasonably booked for a different time. It's the law in your province (and in most provinces):

http://www.albertahumanrights.ab.ca/employment/employee_info/accommodation/medical_leave.asp

http://www.albertahumanrights.ab.ca/employment/employer_info/accommodation/duty_to_accommodate.asp