Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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Lori, Volunteer Mentor | @loribmt | Jul 21, 2023

In reply to @shescomeundone "Good morning, I woke up this morning with my 3rd uti since June 15/23. My urologist..." + (show)

Thank you for sharing your experince about MGUS and the connection with UTIs, @shescomeundone! This may be very helpful for @sjgray who has recurring urinary tract infections and wondering if there’s a relationship.
Have you seen any improvement with the estrogen suppositories and cranberry? What form of cranberries…juice, supplements?

shescomeundone | @shescomeundone | Jul 21, 2023

Good morning, I woke up this morning with my 3rd uti since June 15/23. My urologist wanted to get me off my daily low dose antibiotics that I've been on for 3 years. He put me on estrogen suppositories and told me to also take Cranberry to prevent. He said 2-3 uti's in a year would be acceptable, anything more would warrant a call back. I was diagnosed in April with light-chain mgus and I asked him at my June 1/23 appointment if it would be causing my constant uti's and he said absolutely. I'm 47/female. My ratio in April was 1.20

mizzousc88 | @mizzousc88 | Jul 20, 2023

I have severe osteoporosis (on Evenity x 9 months) and my Kappa/Lambda ratio was 2.01 (just tested). My CBC values were all normal except my Monocytes relative percent was slightly high at 12.6%.
I have had random tingling at random times throughout body. I do go to the bathroom 2 -4 times during the night.
CT scan a few years back showed a small kidney stone.
My Endo said that the ratio is only slightly elevated and to retest the blood in a few months.
Thoughts?

canadabob | @canadabob | Jul 20, 2023

In reply to @yo2 "correction... i was typing < 0 % not 0." + (show)

Are they saying you need a biopsy every 3-4 months or just blood tests?

wendy50 | @wendy50 | Jul 20, 2023

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?

bach | @bach | Jul 20, 2023

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.

sjgray | @sjgray | Jul 20, 2023

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.

yo2 | @yo2 | Jul 19, 2023

In reply to @yo2 "Just recently diaganosed as well with MGUS. I'll soon be scheduled for a bone marrow biopsy...." + (show)

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

yo2 | @yo2 | Jul 19, 2023

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.

canadabob | @canadabob | Jul 18, 2023

In reply to @pmm "Hello Bob, I would think that a hematologist/oncologist would be the definitive expert for you. MGUS..." + (show)

@pmm

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

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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.

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