Tuesday, October 2, 2012

Understanding Pre-Myeloma (MGUS)

Since internet research has literally become my second job, I came across this video on the website Patient Power. It is an interview with Dr. James Berenson about MGUS (Monoclonal Gammopathy of Undetermined Significance).

My technological abilities are clearly lacking and I can't figure out how to embed the video into this post.

But, if you are interested, you can find the full-length video here!

Some important facts that I noted:


MGUS is much more common than myeloma. People with MGUS have the same m-protein as patients with multiple myeloma but in smaller quantities. However, they don't have holes in their bones, anemia, high calcium, and kidney failure.

MGUS is associated with bone loss and patients have a higher risk of fractures and blood clots. Measuring bone density on a regular basis would be appropriate in MGUS patients. Also, after looking at bone density measurements possibly consider Zometa infusions every 6 months. 

Some studies suggest that patients also have a higher risk of peripheral neuropathy - numbness or tingling in feet and hands.

Given that MGUS, like myeloma, is a disease of the elderly, the older you get the higher the risk. Most MGUS patients never develop myeloma - they don't live long enough to develop it. But, if you are a 40 year old with MGUS you've got a lot of years to get there and it's a little more worrisome.


Most of this I knew. However, I've never had my bone density checked! Maybe because I'm not elderly and hopefully my bones are all intact?

Add that to my list of 239843 questions for my appointment in December.

I do have pins and needles in my hands and feet from time to time. My doctor suggested cocoa butter as an emollient. Not sure it's really doing anything except making me smell like chocolate! 

Okay. If it is worrisome to be diagnosed with MGUS at 40...umm...what if you are a 20 something year old with MGUS? Ahem, I was diagnosed when I was 25!

BUT, according to this video (and I did know this), I am considered "low risk" because my protein is IGG, my m-spike is less than 1.5, and my free-light ratio is normal.

Good right? Right?? Phew.

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