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Should I expect more testing? edited

by mrschelsea on Fri Jun 01, 2012 11:31 pm

Hi everyone. It seems y'all have a very good supportive thing going here. I'm not sure if anyone will know anything about this, but I've been reading a lot of your stories and it seems possable, so here it goes. I'm 27, I've had lots of strange issues for some time now..but most recent 3 years rib pain. They keep testing my liver and gallbladder with mostly normal results. Last week I had ct and bloodwork. Ct was normal, but bloodwork has low anion gap of 3, slightly elevated calcium at 10.1, and globulin at 3.2 w ag ratio I believe at 1.4. Oh and c02 high at 34. What concerns me is the anion gap, and the fact that I went over all my past bloodwork and have seen a steady climb in calcium and steady decline in anion gap. Does anyone have insight on this? I really haven't had much faith in my docs and feel that I have to do research on my own..And if these are the things that signal Multiple Myeloma, what would be the next step? 24hr urine test? Can the lab results actually change that much in just a matter of months? Thank you so much..

mrschelsea
Name: Chels
Age at diagnosis: 27

Re: Should I expect more testing? edited

by suzierose on Sat Jun 02, 2012 3:09 am

HI MrChelsea,

WE get not having a MMexpert...and that is a serious issue BUT
While we can get the difficulty of DX multiple myeloma.


What do you mean about anion gap? That is a chemistry question, how are you relating that to multiple myeloma?
Have you had an SPEP or B2 microglobin as well as BM aspirate/biospy..those along with free light chains are what we can relate to here.

Were any of those tests done? If so tell us.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Should I expect more testing? edited

by mrschelsea on Sat Jun 02, 2012 11:03 am

I've just been reading that a low anion gap is usually due to increased globulin, specifically paraproteins found in multiple myeloma. And the increased calcium due to bone destruction. I haven't done any further yet as I'm still waiting to hear from doc. Just wanted to see if anyone could relate, everything for me seems to point this way.

mrschelsea
Name: Chels
Age at diagnosis: 27

Re: Should I expect more testing? edited

by lys2012 on Sat Jun 02, 2012 12:12 pm

Hi most docs will say you are too young for Myeloma. But I am young and got multiple myeloma so it is possible, Had since I was at least 30 (maybe longer) diagnosed at 32, stage 2 multiple myeloma.

Listen to Suzie. You need to ask your doctor to rune a SPEP test (it is a blood test) to check for para proteins in you blood, instead of just trying to guess if you have protein or not from other tests. Did your CT say anything about bone issues in your ribs? Ribs is a common spot for multiple myeloma, but most of us who have it on our rib the CT scan is very sensitive to pick up the damage, either fractures, or lytic lesions etc.

Also, what is your other blood work like? CBC test show anything abnormal like anemia? multiple myeloma frequently causes low counts since multiple myeloma cells crowd the bone marrow.

Good luck

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Should I expect more testing? edited

by terryl1 on Sat Jun 02, 2012 1:29 pm

Hi MrChelsea, I completely agree with what the others have told you. The SPEP is obligatory but with immunofixation. I have a form of myeloma called light chain only in which the SPEP is always perfectly normal. However, unfortunately, I have active myeloma without the traditional "M Spike" everyone talks about. The light chain cohort makes up about 15 to 20% of myeloma patients so it is not an insignificant or rare matter. Our disease is tracked by urine testing and a test called a freelight chain assay and bone marrow biopsies....ouch! The doctor can also check your immunoglobulins to see if you have immune paresis or one of your Ig's is out of whack. You would be young to have myeloma, but unfortunately even teenagers can get it. One of my doctors has a 16 year old patient. Good luck and I hope they figure it out for you for your peace of mind. Terry

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Should I expect more testing? edited

by mrschelsea on Sat Jun 02, 2012 2:18 pm

I've previously had low blood counts, but don't have a current cbc. I will wait and see what the doc says. The anion gap itself may be due to the high C02. They didn't see anything on the xray or ct. As soon as I hear something though I will update. Maybe they will do the SPEP. Thank you for yalls advice:)

mrschelsea
Name: Chels
Age at diagnosis: 27


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