[MorrisonHotel70]

Do I really have MGUS, or is it low-level myeloma?

by MorrisonHotel70 on Sat Sep 10, 2016 11:47 pm

Hi from MorrisonHotel70,

I was formally diagnosed with kappa MGUS in July 2016 by a hematologist. My GP seemed to not have a firm conceptual grasp about this condition, thus I took it upon myself to see a blood specialist.

I had a bone marrow biopsy at the time of my diagnosis, which was negative, and a bone scan, also negative, last summer.

I have calcium levels consistently between 9.6-10.3 as well as RBCs in the low normal range, although HCT and hemoglobin are low normal and have been for years.

My kappa-lambda free light chain ratio was

3.3 in March 2015,
2.87 in May 2015,
2.15 in November 2015, and
2.65 in July 2016.

My kappa is in the normal range and my lambda is low.

My GFR was 112 all of 2015 and has dropped to 86 twice, then back to 97. The hematologist verbalized GFR kidney functioning fluctuates. However, I'm alarmed because it seems to be a precipitous drop since last year.

Am I really MGUS, or do I have a persistent low level of myeloma exacerbating my lower back bone pain?

Thanks so much for any input

[Ian]

Re: Do I really have MGUS, or is it low-level myeloma?

by Ian on Sun Sep 11, 2016 6:09 am

Hello, and welcome to the forum.

Have you had serum immunofixation electrophoresis and serum protein electrophoresis (SPEP) tests done?

The first (immunofixation) would tell you qualitatively whether there is any any monoclonal protein in your blood and what type it is.

The second (SPEP) would determine the level of any heavy-chain monoclonal protein you might have – i.e., what your "M-spike" or paraprotein level is.

Also, do you happen to have any recent IgG, IgA, and IgM measurements, and what exactly is your hemoglobin level?

Cheers!

[MorrisonHotel70]

Re: Do I really have MGUS, or is it low-level myeloma?

by MorrisonHotel70 on Sun Sep 11, 2016 10:27 am

Thanks, Ian,

SPEP normal, yet to have an IFE done.

All the immunoglobulin numbers were normal, no M-spike, hemoglobin at 14.3, then 14.5 and 15.

The bone pain and slight neuropathy concerns me, but I guess I just have to wait. I've been trying to figure out exactly what's going on for about 18 months.

[btdyq5]

Re: Do I really have MGUS, or is it low-level myeloma?

by btdyq5 on Sun Sep 11, 2016 4:44 pm

Hi MorrisonHotel70,

I'm still undiagnosed, but your situation sounds incredibly similar to mine, from the lack of an M-spike to the high kappa-lambda free light chain ratio associated with low lambda and normal kappa levels, and right down to the neuropathy symptoms.

So has your hematologist specifically told you that you have light chain MGUS then? I ask be­cause my hematologist told me that in order for one to have light chain MGUS, the 'involved' light chain (kappa in our case) would have to actually be above the reference range, not just skewed in terms of its ratio to lambda.

I don't know 100% for sure that's correct, but this understanding of the MGUS criteria was reinforced by members of this forum when I asked a similar question a while ago:

"Light chain MGUS - criteria for diagnosis" (forum discussion started July 5, 2016)

Has there been any discussion of looking into AL amyloidosis at your hematologist appoint­ments? That's what they've been investigating me for because apparently the combination of a skewed free light chain ratio and neuropathy can be indicative of amyloidosis. Luckily, after a bone marrow biopsy came back showing no plasma cell dyscrasia, my doc told me that the odds were strongly in my favor that it wasn't amyloidosis after all, and I'm supposed to just follow up in January for repeat testing.

If amyloidosis was on your doc's radar of things to be looking for, there would probably be some mention of the use of 'Congo red stain' on the bone marrow biopsy report, as that's the stain they use to identify amyloid proteins.

Good luck and keep us updated on your progress! There are a few of us floating around on this forum with results that are abnormal but don't necessarily point to a specific disease.

[MorrisonHotel70]

Re: Do I really have MGUS, or is it low-level myeloma?

by MorrisonHotel70 on Sun Sep 11, 2016 8:53 pm

Thanks for the information. I appreciate it. It's incredibly exhausting because most physicians think you're crazy, while friends and family are completely clueless to MGUS and myeloma. Amyloidosis was not mentioned and it doesn't appear to fit my profile as I've gotten somewhat well versed for a layman over the last 18 months.

[Ian]

Re: Do I really have MGUS, or is it low-level myeloma?

by Ian on Mon Sep 12, 2016 4:51 am

Hello MorrisonHotel70,

btdyq5 already has given a lot of the feedback I myself would have written. Allow me to add that it would be helpful to have the immunofixation test done. It will check to see whether you have any monoclonal heavy chain or light chain proteins present in your blood.

As btdyq5 suggested, if the immunofixation test comes up clear, and given that you have a clear bone marrow biopsy and no signs of anemia (based on your haemoglobin levels), it would be hard to understand why an MGUS diagnosis was made.

You do have a serum calcium level that is on the high end. However, in most cases of high serum calcium levels, the parathyroid is the source of the problem.

Cheers!

[Multibilly]

Re: Do I really have MGUS, or is it low-level myeloma?

by Multibilly on Mon Sep 12, 2016 7:59 am

Hello MorrisonHotel70,

As usual, I agree with Ian. Did you have a 24-hour urine test that showed any urine M-spikes (Bence Jones proteins), or any other abnormalities? As Ian said, a serum immunofixation test will also be important in getting to the bottom of this.