MGUS and pain

I would like to tell everyone how happy I am to have found these pages and all of you. I have several term and some new medical issues . In reference to MGUS my immunologist mentioned in an e mail that I had it. Period. I was actually referred to an oncologist by my pain management PA, when I asked her about it. Also I had one more email with the immunologist who questioned me going to cancer Dr. .. because he said MGUS was benign There's more too this story but hello!

I've had MGUS present in my Electrophoresis tests for years and it will always show up. I'm IgG kappa and have LOTS of bone pain everywhere; particularly in my back and ribs. My mother died from MM in 1985, so, of course, I was really concerned for a while. But since my bone marrow biopsies (have had 2 now) didn't show high number of plasma cells present, they only monitor my MGUS once a year. Been told I probably will never have MM. MGUS is just another annoying hammer over our heads these days but after the MM doc at the NIH suggested bisphosphonate infusions, the pain is much better. I had something like 6 infusions of Reclast years ago but can no longer have them as they can worsen or cause jaw and hip problems. Have lots of osteoarthritis issues but only take Advil now to help.

Best wishes!

I am new to this group. My sister passed away with Light Chain Deposition Disease. Light Chain Multiple Myeloma is the 3rd most common Myeloma. It attacks your large organs and most usually the kidneys, also causing bone pain.
My sister had one kidney transplant at Mayo and 10 years later was scheduled for her second kidney transplant. She succumbed to complications of the disease 2 weeks prior to the second surgery.
I had promised her I would be tested, which after her death, I was diagnosed with MGUS. This was 11 years ago. I have been under the care of an oncologist/ hematologist for over 10 years. Depending on my blood work, I repeat them every 6 mos or a year, I have either a whole body bone scan or MRI, too. I have had 2 PET scans and bone biopsies.
My numbers will elevate then stay level for months. He follows the Kappa and Lambda light chain levels and their ratios closely, also.
I know different laboratories have their own charting for normals to abnormals but I was reading thru theses comments where patients are talking about their test results seeing if anyone posts their actual test results in numbers.
It was just something I would like to compare, mostly because I am having low back pain and so fatigued last few months. I have an appointment first week in March.
Thank you. May you days be happy and healthy.

@kkieft Welcome to Mayo Clinic Connect! My condolences on losing your sister, and kudos to you for going forward with being tested.

As you read the posts here, you will find that many people are handed a diagnosis of MGUS and continue to live on without any progression to smoldering multiple myeloma. And your story is yet another one!

When a blood test is taken, a patient's gender and age are also factored in to the results. That may show up different for everyone. Just a hint! Have you thought about the low back pain being associated with seasonal reduced activity, likewise the fatigue? We often "slow down" in the winter months.
Ginger