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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: Diagnosis: MGUS

by Dr. Peter Voorhees on Mon Aug 27, 2012 5:09 am

2 M spikes is not worse than 1. You have an alternate explanation for your anemia (iron deficiency). As such, this may just be MGUS. However, I think you need to have your back pain and leg weakness evaluated as soon as possible.

Good luck!

Pete V.

Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: Diagnosis: MGUS

by Anonymous on Mon Aug 27, 2012 10:48 am

Very rarely on your SPEP report will it state "M-Spike" itself. Differant Labs use differant terminology such as "Monoclonal Region" or other verbage. Usually a Immunofixation test is conducted and reported on your SPEP report. This determines the type of paraprotein present. Most multiple myeloma patients are typed IgG or IgA and either Kappa or Lambda. A typical report might say : Monoclonal Gammopathy: IgG Lambda, for the Immunofixation part. The M-Spike is a percentage of the Gamma globulin and in some cases Beta globulin reported on your report. In addition a graph trace is usually reported to your doctor by the lab and usually follows the written report by several days. Try to get a copy of this from your doctor.

Billy1

Anonymous

Re: Diagnosis: MGUS

by Yvie Dee on Mon Aug 27, 2012 11:25 am

Thanks Billy. Well I just had my bloods drawn on Friday. I will find out on my next visit next week what the results are. Now I had a Beta 2 test done almost a year ago and it was 1.49.

Yvie Dee

Re: Diagnosis: MGUS

by Ron Harvot on Mon Aug 27, 2012 1:32 pm

There appears to be sigmnificant doubt in your mind as to your Dr's diagnosis, get it settled by seeing a multiple myeloma specialist.

If you are in a major metropolitan area there may be a cancer center that treats multiple myeloma patients. I would start there.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Diagnosis: MGUS

by Billy1 on Mon Aug 27, 2012 2:17 pm

For further Clarification:
The typical SPEP report will contain the following:
1) Total Protein
2) Albumin
3) Alpha 1
4) Alpha 2
5) Beta Globulin
6) Gamma Globulin
7) Allbumin/Globulin ratio
8) The M-spike reffered to as Monoclonal region or other verbage according to your lab.
9) Immunification results when conducted
10) The SPEP scan trace showing in graph form your Albumin and various globulin levels

The B2 microglobulin test is seperate and NOT part of SPEP

The Free Light Chain test (Freelite) showing Kappa and Lambda levels is NOT part of the SPEP.

IgG Quanification testing showing good and bad IgG,IgA, and IgM protein numbers is NOT part of SPEP testing

All of the above tests are related to Multiple Myeloma diagnosis.

Make sure you keep copies of ALL your test results.

Billy1

Billy1

Re: Diagnosis: MGUS

by Yvie Dee on Tue Aug 28, 2012 5:02 pm

Hi Billy. This is very clarifying. I appreciate this a lot. I have already requested a copy of my medical records and blood tests. Glad I did. :-)

Yvie Dee

Re: Diagnosis: MGUS

by Tarsam on Thu Aug 30, 2012 4:16 pm

Dear Yvie Dee
I was diagnose with MGUS approx 25 years ago and had been healthy till 2006.
MGUS is also thought to be smoldering Myeloma, this takes many years to develop into Myeloma as in my case. Myeloma is hard to diagnose. The symptoms are usually mild bone pain in the rib cage or spine or other large bones. A urine test to check for Bense Jones protien may help. This is how mine was diagnosed after going through other exhaustive tests. A lot depends on how old you are.
Hope this helps
Tarsam

Tarsam

Re: Diagnosis: MGUS

by Yvie Dee on Thu Aug 30, 2012 4:31 pm

Hi Tarsam. Wow 25 yrs! I was diagnosed with MGUS in 2008. I started getting pains on my back, my hip, the back of my neck and at times my ribs. When it goes away I think to myself "oh it's nothing" and just ignore it. I have weakness in my legs like if it's a major mission to walk. I limp for a while until I can walk a little normal. BTW, I'm 46. :-). But 2 days ago I was getting ready to go up the stairs in my townhouse and I got the worst pain in my lower back that it felt like it was paralyzing me.

Yvie Dee

Re: Diagnosis: MGUS

by Tarsam on Sat Sep 01, 2012 5:36 pm

Hi Yvie Dee,
The pains you are describing are similar to mine ie dull boney pain, it got sharper with movement.
Do not ignore these pains what so ever. Have yourself checked for Myeloma, this is a bone cancer and it destroys the bones from the inside and displaces the calcium from the bone into the blood stream. After I was diagnosed, I had an MRI scan which revealed damage to my vertibrae's , one of them was so badly disintigrated and it was compressing my spinal cord. I was very fortunate to be given treatment just in time. there was slight cracks in my ribs. Bones are a living matter, if something is wrong it lets you know just like other organs in the body. I have gone through a lot of treatments and survived. I also like to help others by sharing my experiences so that others can understand benefit from it. I would honestly urge you to see a Haematologist and ask him to check for Myeloma and get the neccessary treatment promptly. The longer it is left untreated, the more damage is being done to the bones and also suffer other organ damage through excess calcium in the blood. This may sound very daunting and may get you worried but you have to fight these problems.

Tarsam

Re: Diagnosis: MGUS

by Yvie Dee on Sun Sep 02, 2012 7:24 pm

Hi Tarsam. I do see a heme/onc doctor. I have an appointment to see him this Thursday and I do intend on mentioning my dull pains. I really despise the wait and watch with MGUS. But I know I am not the only one dealing with this. I really appreciate all you have shared with me because it really helps. Thank you. :)

Yvie Dee

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