[lhuntd]

Hi My name is Emily

by lhuntd on Thu Dec 27, 2012 3:35 pm

Hi, I am new to this forum. My hx is that I have had Lupus for about 20 yrs now. I also have Sjogrens, hypothyroidism, and mitral valve pro lasp. I was recently diagnosed with MGUS (3 yrs). I also had idiopathic thrombocytopenia in 1996.
My rheumatologist found an abnormal blood protein in blood work. Last year my blood work came back with the following results. (only abnormal results) I have put this years results next to last years.

CBC 2011 / 2012

RBC LOW 3.90 / 3.99
MCH HIGH 32.8 / 32.9
RDW LOW 10.7 / 11.1
NEU% HIGH 73.5 / 81.7
LY% LOW 18.6 / 11.2
NEU% ANC HIGH 4.1 / 5.9
LY% LOW 1.0 / 0.8
PLT NORMAL 289 / 305
CALCIUM HIGH 10.5 / 10.4


LDH 196 / 166

BETA 2 MICROGOBULIN HIGH 2.93 / NOT DONE
IgG quant 822 / 594 low
IgA,quant low 47 / 30
IgM quant high 601 / 359
monoclonal spike high 0.4 / 0.3
kappa light chain free high 37.0 / 41.8
lamba light chain 10.9 / 6.6
free k/l ratio high 3.39 / 6.33

other tests
total protein 7.6 / 6.8
albumin, spe 4.5 / 4.2
alpha 1 globulin 0.3 / 0.2
alpha 2 globulin 0.8 / 0.8
beta globulin 0.9 / 0.9
gamma globulin 1.1 / 0.7


I am doing a 24 hour urin test right now.
My doctor does not seem to be worried but I am because the results have changed. But I do not know if it is for the better or worse. I am even more concerned because my dad died of Ambloidosis and my mom died of a type of anemia where she had to get blood transfusion all the time. My question is: Am I on the road to multiple myeloma or am I being concerned over nothing. Any feedback would be great.
Thanks,
Emily

[Kevin J]

Re: Hi My name is Emily

by Kevin J on Thu Dec 27, 2012 4:39 pm

Hi Emily,

I am not an expert by any stretch, so can only offer a couple of observations.

With respect to your lab results, the tests that stick out to me are your IgA, IgG, IgM, M-Spike, and Total Protein. These have all gone down from 2011 to 2012. If your MGUS was going active, I would expect to see one of the Ig's, M-Spike, and Total Protein to be going up. Unless you only present through the light chains, in which case that would require interpretation of your kappa and lambda light chains and their ratio. Someone else will need to chime in for that since I'm not well versed in that area (consider searching the site for "light chain", or look through some of TerryL's postings since he has light chain multiple myeloma).

The other concern I would have is all the other medical diagnoses that you have and how they might potentially affect your lab results. I would definately consider seeing a doctor with signifcant experience with multiple myeloma if you are not already. As most people on this site would probably confirm, multiple myeloma is rare enough that most oncologists don't see enough multiple myeloma cases to necessarily provide the best care and treatment. In your case it's even more important given the additional complications that your other diagnoses could present.

Good luck.

[lhuntd]

Re: Hi My name is Emily

by lhuntd on Thu Dec 27, 2012 6:38 pm

Kevin, Thanks for you input. You have helped with some questions, but I am still up in the air. I do know that my other illness do play a role in the lab results. What I have notice after reading on this forum, is that most people have had a bone biopsy to help determine. To this date, my doctor has not requested for me to have one. This concerns me as much as both my parents died from this abnormal blood protein. They did not catch it in time to be helped. I do not want to be in the same boat, I would preferr to be proactive in a preventative treatment, if there is any indication that my MGUS has progressed to something else.

[terryl1]

Re: Hi My name is Emily

by terryl1 on Fri Dec 28, 2012 8:11 am

Hi Emily, I agree with Kevin that you should see a myeloma expert. I am surprised that you have not had a BMB since it is one of the gold standards to determine exactly where you stand with regards to your level of PC infiltration. Also pursuant to the CRAB criteria, your calcium appears high. How is your creatinine and kidney function? Your RBC is low, but you didn't indicate your hemoglobin. Have you had imaging tests to determine possible bone involvement? Good luck. Terry L.

[lhuntd]

Re: Hi My name is Emily

by lhuntd on Fri Dec 28, 2012 7:38 pm

Hi Terry, thanks for the input.
My creatine on 12/19/11 was 0.93. It is actually down this year to 0.87
I have not had a kidney function test (really not for sure what that is)

My hemoglobin in 2011 was 12.8 this year it is 13.1

When my rheumatologist found the abnormal protein, I had a complete body scan, but they never told me the results. That was about 3-4 years ago. The only tests she has done are blood tests. I am waiting on my 24 hr urine. Maybe that is what my oncologist is waiting on. I have decided to get a second opinion and have began the process of getting an appointment at MD Anderson here in Houston. The past couple of years, I have been getting several sinus infections and bronchial flare ups. As a matter of fact, I am home today because of my bronchial cough and a low grade fever. I stay tired all the time, but I also have Lupus, so it is difficult to know which one is flaring up. I told my doctor on the 19th of this month that I was having bone pain in my knees, hips, elbows and arm and shoulders, but she did not seem to be concerned. I still work full time and I have recently noticed that my ankles swell quite a bit. As I told Kevin, I don't want to wait until the last minute like what happened to my parents. I did look on my mom's death certificate and she died of hemolytic anemia. She was getting blood transfusions on a daily basis (x2) until the day she passed away. I honestly do not know if that is of any significance.