[Quincypp]

Do I really have MGUS?

by Quincypp on Sat Jan 24, 2015 2:16 pm

I was experiencing low grade fevers, swollen lymph nodes and general ill feeling a few years ago (yes years) and had a battery of tests to rule out severe illness - lymph node biopsy (negative for lymphoma) blood results were extremely low iron, ferritin, extremely high CRP levels.

My doctor sent me to several specialists. Had a gallium scan that the doctor said I lit up like a Christmas tree. So off I went to another specialist to see what was going on with my bone marrow. He attempted the bone marrow biopsy (BMB) but was unable to get a sample without causing significant pain, so he opted to do a MRI to see if the BMB was really necessary. He also did a free light chain test as he was sending me back to my family doctor. Before getting the FLC results, he sent me back to my family doctor for follow up saying this is not a bone marrow issue based on the MRI results.

The results of the FLC were an abnormal ratio of 2.3 with the kappa causing the variance at 45.9. My family doctor said I had MGUS and off I went to another hematologist. She tested me for lupus, RA, etc, all came back negative - and was treating my low iron levels with iron infusions.

Nothing really stuck with the iron and my levels always dropped with only mild increasing with the iron infusions. The fevers come and go - not as bad as they were. The MRI showed disk degeneration and herniated disks and but nothing specific to the bone marrow. She didn't want to do a BMB as she felt it wasn't necessary.

Due to my long commute she transferred me to a doctor closer for me. This doctor is re-doing all my lab tests and feel like I am starting all over again. I have no periods anymore with an IUD in place - so they can't blame my iron absorption on that anymore.

I have have severe bronchitis and pneumonia 4 times in the last 6 months - severe enough for prednisone and several puffers. He is now sending me to a lung specialist as breathing still isn't 100%

Recently my back has started causing extreme pain, so off i went to my family doctor (after chiro and physio did nothing) and he's sending me to a back specialist and he was stating that, with the MGUS diagnosis, it's important to have this checked out.

Since I never had a BMB, now wondering do I really have MGUS? I had a follow up FLC test and my kappa was still high, but ratio was in the normal range. Should I press to have the BMB?

I have lost 40 pounds (trying), so should be easier now. My family doctor has been wonderful - he's very concerned that they can't figure out what's going on. Problem I'm told is all these tests are "non specific" and are symptoms not diagnosis.

Thoughts?

[jhorner]

Re: Do I really have MGUS?

by jhorner on Wed Feb 11, 2015 11:10 am

Hello,

I don't think you can rule out multiple myeloma or other plasma cell dyscrasia without a bone marrow biopsy. I had a similar experience where I was diagnosed with MGUS based on the M-spike and did not have a bone marrow. I was also sick all the time and when I finally had the BMB, after switching oncologists, I was diagnosed with SMM. Still sick now but on IVIG therapy and still feeling as though there is a miss in my diagnosis but I was told by my multiple myeloma specialist, whom practices in a highly respected cancer institution, that sometimes even minimal amounts of myeloma in the marrow can make a person sick.

My advice to you is to insist on the bone marrow biopsy and take it from there.

Good Luck.
J