Does anyone else have MGUS?

Hi Ginger,

The neurologist has been sending me for tests every six months to monitor. Protein Monoclonal Band and free light chains...so I have about 8 tests, the last one being a month ago.

I asked him specifically a few weeks ago about seeing a hematologist and his reply was that they would simply do a marrow biopsy and that he thought it would be a waste of the specialist's time and of my time. Not sure why he's taken this attitude, but I'm going to ask my GP next week for a referral.

Bob

Hi, My name is Teresa. I believe being 77 years young things happen for a reason. In 2021 I was at the Mayo clinic in Rochester for other unrelated
problems. After getting home I printed out my records and saw the results of
an SPE test. They discovered a fraction M protein. What is this?????? Come to
find out MGUS. Since then I have had several SPE and IFE and Kappa/ Lambda test through blood work. In a way I am lucky. I have non-hodgkins
lymphoma called CTCL. Because of this my oncologist/hematologist does
Ct’s every 6 months and labs every month. January of this year they found a M
protein IgG Lambda same as the Mayo found. On June 6 this yr. my oncologist
did labs and Kappa/Lambda testing. They found M protein in the blood but also M spike on the electrophoresis. At this point because it is a small amount
my doctor will keep an eye on my labs. This is one reason you need a hematologist. I have searched up and down for basic information that tells what MGUS is so I can explain it to the family. I told my husband today, that
this is a watch and see. What I need to get more info on is M protein and the
kidneys. Today I had a kidney stent exchange. It is amazing to me more doctors don’t know about this. To answer your question. You aren’t alone.

@dodgegirl2 Welcome to Mayo Clinic Connect. You are in the right place, asking questions!

Here is an article from the International Myeloma Foundation website, about MGUS. As you will see from our fellow members, most everyone goes a long time without ever advancing in their disease status to the next level, usually several years, if at all. The watch-and-wait can be frustrating, but it is crucial to keep track of things, as you already have found out.

Do you have any questions for me?
Ginger

Hello Bob,
I would think that a hematologist/oncologist would be the definitive expert for you. MGUS is not cancer but it is definitely a blood anomaly that has the potential to morph into cancer. While the statistics of that happening are favorable to us and unfavorable to Multiple Myeloma, we must protect ourselves as best we can by getting diagnostic bloodwork done on a regular basis. The results are complicated so I want the most experienced hem/onc doctor I can find to read those results and advise me.
For the first almost three years I got quarterly blood draws but have “graduated” to every six month draws just recently because my numbers have been stable. There are members in this forum that have MGUS which has not advanced in well over a decade, and those who have had a quick progression to smoldering Multiple Myeloma or Multiple Myeloma. We all wish you disease stability, but encourage you to find the best health care provider to monitor your blood disorder.
Be picky. I don’t know about where you live and the availability of good Hematologist/oncologists in your area, but find an experienced one who will be patient with all your questions and be vigilant about monitoring you for progression of your disorder. Make sure you get a referral from your PCP. In my experience they know very little about blood disorders. Luckily, my own freely admitted that she does not and referred me right away. Finding the right doctor is sometimes luck-if-the-draw, but read recommendations and look at training credentials.
Finally try to keep a glass half-full perspective. MGUS is a strange duck that can be without any symptoms at all. I go about my life and travel, do things with husband friends and aside from some neuropathy in my feet (which is probably attributable to diabetes but who knows) I have no other symptoms. Enjoy life. Have fun. Worry about those things over which you have control.
I wish you all the best.
Patty

For those kind enough to answer and give advice, an update:

My GP has agreed to refer me to a hematologist.

I'm in Canada, so it could be a while, but at least it will happen.

Thanks to all.

Just recently diaganosed as well with MGUS. I'll soon be scheduled for a bone marrow biopsy. My provider told me if the plasma cell count is < 0% I should be OK and should be checked every three or four months. A lot of people live for years at this level. If 10-60% it's classsed as smoldering myeloma a slow growing type of multiple myeloma. 60%+ if full on multiple myeloma. Good luck to all of us.

correction... i was typing < 0 % not 0.

I've been diagnosed with MGUS, by chance, does having recurring UTI's have anything to do with this. Trying to find cause for this. Thank you.

I fell skiing in December and had a fractured pelvis that as of today, shows no sign of healing. Dozens of x-rays, Ct's and blood testing later I was diagnosed with MGUS. I'm still awaiting an apt with a Hematologist.

I have been diagnosed with MGUS for a number of years. Have an annual assessment for progression, but that hasn’t occurred. What would you like to know?