Does anyone else have MGUS?
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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Wow, biclonal! Had to look up proteinuria. Turmeric sounds interesting....
Can I ask how much turmeric you are taking daily ? Thank you
I have increases in both FLCs but ratio stable. I’m also Biclonal IgG kappa and IgM lambda so maybe that’s why?
I have my next appointment soon so I’m going to try to get more clarity.
I also have had mild, but increasing proteinuria since 2021 when first diagnosed with MGUS.
I started taking turmeric about 6 months ago and now my proteinuria is gone!
Went from 195 to 120mg/dl in the 24 hour urine test. I’m hoping the FLCs also go down- waiting on those.
I’ve had no problems tolerating the turmeric.
* I’ve also read that inflammation can be a factor so turmeric is a strong antioxidant & anti inflammatory.
Yes, push for labs in six months.
Ginger
Yah, it's all so challenging. I have IGG so they dismissed it outright.
So had my consultation. I brought in my written timeline. He dismissed it without even looking at it. His statement was the type of mgus you have does not have symptoms so whatever it is, it's not related. That was pretty disappointing. But eventually he started to talk more and we ended with a good conversation and him explaining why he didn't think my various issues were related to mgus. I think he makes sense.
Big issue for me is the increase in both FLCs. Makes the ratio normal because they're both near the top end of the range. He finally noted that if there were deposits they would need to biopsy but at this point there was no indication. That made me feel better because now I know that as long as it's still intermittent, I'm ok.
So all on all, on the long road of wait-and-see. I'm still going to push for labs in another 6 months and then I'll go to every year or 2. Glad I went.
Thanks for listening and for this group.
I had similar experience. I have IgM MGUS, anti-MAG and WM but after almost two years of the peripheral neuropathy I quickly got numbness in my face. I told my neurologist, and he immediately ordered a brain MRI (small chance but my WM has possibility of Bing-Neel CNS involvement). Concerning but it was symmetrical, so after a clean scan it came down to just more neuropathy that is atypical. So, we can't just rely on what is typical.
Thanks, @gingerw. I hadn't considered writing it down. I'll do that.
@mikxtr I will be interested to hear about your appointment, what you think of this new doctor and all afterwards! May I suggest, if you haven't already, is to have a timeline written out of your symptoms, how it is affecting you, how to address it. Have one copy for you, one for the doctor. Let this person know you want to be part of the solution to your concerns, and want to be engaged, proactive, and ready to listen to what they have to say. I truly hope this will make a difference in how you are seen as a patient.
Ginger
Also, they tend to connect neurological issues with IgM and I have IgG.