One patient with glioblastoma still alive nine years later
by hummingbird9 on Thu Jul 21, 2011 08:38 PM
Hi everyone, been away for a while battling depression and not wanting to go online much, no energy. I have had MGUS since 1998 when a Reumatologist did a serum protein electrophoresis test and called me at work to tell me they will be "watching me" I get a blood test every 3-6 months since and when I had a spike in December 2010 I got a referral to an Oncologist. He made very light of my numbers and told me he will see me on a yearly basis from now on. But over the years I have had protein in my urine...would that also be part of MGUS or something different? I do have a heck of a lot of other things going on.
by UTboy1 on Fri Jul 22, 2011 12:12 AM
I believe the doctor would be able to identify the type of protien in your urine to determine if it's MGUS/Meyloma related.
I wouldn't tolerate an onco making light of my disease. Send himi/her packing. Obviously that person is not fully in your camp.
by Billy1 on Sun Jul 24, 2011 06:35 PM
Are your Free Light chains kappa or lambda? I assume they found the M component protein (Sometimes reffered to as Bence-Jones ) during a normal urine test or did they run a UPEP which includes the 24 urine test?
It is not uncommon for MGUS or SMM individuals to have protein in the urine according to studies by the Mayo Clinic and others. About 66% of MM patients have protein in the urine.
by summerluvr on Mon Jul 25, 2011 04:51 PM
I have protein in my urine, how to tell? it looks like a bubble bath! Ok TMI ;) But I've had the 24hr collection and was told it didn't show the myelom protein. Or maybe that it didn't show anything differen then my blood work? I think with Myeloma you just have this higher protein load in your body so it shows up in other places. Have you had complete myeloma testing including the freelight test and 24 hour collection? If so I wouldn't be that concerned about it. Sort of goes with the teritory.
by More57 on Thu Jul 28, 2011 10:47 PM
I was diagnosed MGUS because of Bence Jones proteins in my urin. Up to my knowledge about 30% of all MGUS have this symptom.
What is important: according to Mayo Clinic it is not a risk factor.
1) have an urin test "quantitative" to measure the quantity of monoclonal light chains (note the standard test result is yes/not), my level is around 8-9 mg/dl, about 180 mg per day
2) drink a lot of water, above 2 l per day should reduce the risk for the kidneys.
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