Does anyone else have MGUS?

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.

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.

Hello again. I have my first consultation with a hematologist coming up on Wed and I'm excited ... and nervous that I'll be brushed off again. For over a decade, I've had numbness in my septum, roof of my mouth and tongue. It's a curious case when 100% numbness may come in any of these areas for a short period of time, but a loss of sensation is present all of the time in my tongue. I saw a neurologist about this back then and he couldn't determine the cause (because it's symmetrical, smack dab in the center). I even had a spinal tap done to rule out MS. What's interesting is the spinal showed high IGG in my blood (>2000 mg/dL) and low albumin in my CSF (7.0 mg/dL). I wish I had been sent to a hematologist then. Instead, I was diagnosed with migraines (which I'm beginning to think is the neurological catch-all) and sent on my way.

Last year, an observant PCP noticed my slightly low HGb, which is how I landed here today. But the more I read, the more I think that my neurological issues (which are getting worse by the way) are tied to MGUS. Unfortunately, everything I read is focused on hands, feet, gait and not really any other areas. I want to discuss this with the hematologist on Wed, but I fear I will be dismissed, much like my PCP who stated "sometimes we just don't know".

Am I off my rocker? I plan to bring up the results from 10 years ago combined with today and hope that he'll also see a connection. But if he doesn't, do I let it go? Hard to let go when I think it sometimes impacts my swallowing. Did I mention that the numbness is extending to my throat? It's hard not to think that the function of my throat isn't impacted, that it won't cause more significant issues down the road, like eating, drinking and breathing. You know, minor things that keep you alive.

Uh ... not panicking,
mikxtr

@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

Hello again. I have my first consultation with a hematologist coming up on Wed and I'm excited ... and nervous that I'll be brushed off again. For over a decade, I've had numbness in my septum, roof of my mouth and tongue. It's a curious case when 100% numbness may come in any of these areas for a short period of time, but a loss of sensation is present all of the time in my tongue. I saw a neurologist about this back then and he couldn't determine the cause (because it's symmetrical, smack dab in the center). I even had a spinal tap done to rule out MS. What's interesting is the spinal showed high IGG in my blood (>2000 mg/dL) and low albumin in my CSF (7.0 mg/dL). I wish I had been sent to a hematologist then. Instead, I was diagnosed with migraines (which I'm beginning to think is the neurological catch-all) and sent on my way.

Last year, an observant PCP noticed my slightly low HGb, which is how I landed here today. But the more I read, the more I think that my neurological issues (which are getting worse by the way) are tied to MGUS. Unfortunately, everything I read is focused on hands, feet, gait and not really any other areas. I want to discuss this with the hematologist on Wed, but I fear I will be dismissed, much like my PCP who stated "sometimes we just don't know".

Am I off my rocker? I plan to bring up the results from 10 years ago combined with today and hope that he'll also see a connection. But if he doesn't, do I let it go? Hard to let go when I think it sometimes impacts my swallowing. Did I mention that the numbness is extending to my throat? It's hard not to think that the function of my throat isn't impacted, that it won't cause more significant issues down the road, like eating, drinking and breathing. You know, minor things that keep you alive.

Uh ... not panicking,
mikxtr

Hello again. I have my first consultation with a hematologist coming up on Wed and I'm excited ... and nervous that I'll be brushed off again. For over a decade, I've had numbness in my septum, roof of my mouth and tongue. It's a curious case when 100% numbness may come in any of these areas for a short period of time, but a loss of sensation is present all of the time in my tongue. I saw a neurologist about this back then and he couldn't determine the cause (because it's symmetrical, smack dab in the center). I even had a spinal tap done to rule out MS. What's interesting is the spinal showed high IGG in my blood (>2000 mg/dL) and low albumin in my CSF (7.0 mg/dL). I wish I had been sent to a hematologist then. Instead, I was diagnosed with migraines (which I'm beginning to think is the neurological catch-all) and sent on my way.

Last year, an observant PCP noticed my slightly low HGb, which is how I landed here today. But the more I read, the more I think that my neurological issues (which are getting worse by the way) are tied to MGUS. Unfortunately, everything I read is focused on hands, feet, gait and not really any other areas. I want to discuss this with the hematologist on Wed, but I fear I will be dismissed, much like my PCP who stated "sometimes we just don't know".

Am I off my rocker? I plan to bring up the results from 10 years ago combined with today and hope that he'll also see a connection. But if he doesn't, do I let it go? Hard to let go when I think it sometimes impacts my swallowing. Did I mention that the numbness is extending to my throat? It's hard not to think that the function of my throat isn't impacted, that it won't cause more significant issues down the road, like eating, drinking and breathing. You know, minor things that keep you alive.

Uh ... not panicking,
mikxtr