Does anyone else have MGUS?

Hi!
I agree with checking for an autoimmune disease. I’ve had 4 different drs, including one at Mayo diagnose me with Fibromyalgia. I definitely have the aches you’re describing. But I don’t know that it has anything to do with my MGUS.
My initial finding of MGUS was actually a polyclonal one. Meaning that instead of a monoclonal, one, I had two spikes. One slowly went down over the years & then I was diagnosed with chronic Lyme disease. Related? Not sure. But you can drive yourself crazy trying to understand this glitch we have in our blood. I threw away an entire box of research & decided to do what the drs told me….go live your life & let us take care of this.
Best advice ever! I will always wonder if my bad days, or new pains are the MGUS, but I probably won’t ever have the definitive answers I’ve searched for. Try not to let it overwhelm you, it’s just there for now.

Hi Colleen!
Thank you so much for the welcome and the links to look at.
It’s been an “up & down” journey for sure. I guess I feel like the older I get the greater the odds of progressing to MM.
My GP doesn’t check my MGUS at all. Not surprising since the Drs at Mayo told me there was no one qualified to keep an eye on it in my area.
So I haven’t had it checked since 2018 I think. My next appointment coincided with the beginning of the pandemic & I was afraid to travel anywhere.
I would really love to find out about a clinical trial that I would fit in.
I was very fortunate to have seen Dr Kapoor and I know he is an amazing researcher on MGUS.
I will keep looking and hopefully this next year can get back up there.
Again, many thanks and if I can help reduce the fear of living with this condition, or answer any questions for someone, I’m happy to do so.
Kaylynn

Hi @kk1221, you are a welcome asset to the group, having lived for 30 years and counting with MGUS. Your experience and knowledge will be especially helpful to those members who are recently diagnosed with MGUS. You can use the group search to find MGUS related discussions. For example, I think you might be interested in these 3 to start:
- MGUS at young age https://connect.mayoclinic.org/discussion/mgus-at-young-age/
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- MGUS Bloodwork Frequency https://connect.mayoclinic.org/discussion/mgus-bloodwork-frequency/

- Is there anything to help stop or slow progression of MGUS? https://connect.mayoclinic.org/discussion/stopping-progression-of-mgus/

Thank goodness you were able to get the diagnosis and care you needed at Mayo Clinic. I can imagine you are concerned about the recent changes in your blood work. Has your GP suggested a clinical trial for which you may be eligible?

Agree there is no link established (yet) with any known cause for MGUS, but human nature is to try to do what we can to feel in control vs feeling helpless.
I have questioned links with vaccines, weight/diet and stress levels (chronic and/or acute trauma).
I had to have the rabies series shots and immunoglobulin treatment recently (tried to pet a stray dog in Turkey that bit me!) and m protein remained too low to detect. But FLCs went up. Will recheck in May but maybe it will return to baseline.

Also, I have discovered a connection between stress and FLCs and found it does increase during physical and psychological stress. I experience increased thirst and slight bubbles in my urine that last a few hours before returning to normal when I feel anxious or stressed about something.
I try to be more aware of my stress response and include relaxation practices- hope this was helpful!

@andrew1955
I’m so sorry I missed your post. Yes, how did your appointment go?

@4kleo
I’m circling back and reading some posts I missed. First let me say that I’m 72 so don’t shoot the messenger when I say that age is a factor with MGUS. Typically, those diagnosed fall into the retirement age category. We don’t have the market covered completely as younger folks are diagnosed as well. Almost everyone who is diagnosed had an incidental diagnosis when they were looking for something else.
The etiology of MGUS is indeed a mystery. There is no known connection between vaccines or medications and MGUS. Maybe one day they will discover what causes it, but so far, they don’t know.
The good news is that the risk of progression to blood cancer is very low and you will get very good medical care with frequent blood analysis and other diagnostic tools so if you do get sick, you will get early diagnosis and treatment.
Do you mind letting me know when you will go back to see your doctor?

Hi @andrew1955, you're right. @pmm knows what it is like to be diagnosed with MGUS and to have loads of questions.

How did your appointment with the hematologist go last week? What did you learn about next steps for you?

@dcuste thanks. My hem/onc doc kind of rolled his eyes but my PCP supported my effort to do something besides watch my numbers inch up. It’s very early in my curcumin experiment but I am hopeful. I suspect it is not going to work the same way for everybody, just as the pharmaceuticals vary by person in their effectiveness, but having investigated potential for harm and finding none…why not try?
I get my 6th month blood draw this coming Thursday. We’ll see.
Best of luck with your efforts. Will you let me know how it goes?

Patty, Thanks for posting this. This is exactly the type of information that I've been searching for. I've was taking turmeric with black pepper for years. Two years ago, I was diagnosed with MGUS and put on "wait and see" with 6 month testing. At that time I went to a curcumin complex and per day took 3g turmeric (300mg curcumin). My last blood tests showed M protein and IgM continue to rise exponentially. I just started supplementing the 3g turmeric by taking an additional 1g turmeric (950mg curcuminoids C3 complex). This should now be about 4X the active ingredient I had been using.
I did hint my plan to my Hematologist/Oncologist. She made it very clear that she wasn't going to comment or recommend anything other than the standard protocol. Glad to read you are having positive results.

This is what I take.