Does anyone else have MGUS?

My own journey with MGUS started in 2014 when my neurologist recognized the ratio between proteins in bloodwork was “off” and ordered serum protein electrophoresis for me at the age of 43.

Though my IGg Mspike (κ light chain)
and bone marrow % have remained low, my numbers fluctuate a lot. Sometimes doctors have been hopeful that it will burn out and disappear. But then it will rise again, and maybe a few months later rise some more and then drop the next time we check.

They call this asymptomatic.

My intuition about my body and the myriad autoimmune symptoms/
manifestations and overall poor health, frequent difficult infections (and even with something like raging kidney infections requiring surgery did not create a rise in white blood cell counts), et cetera lead me to believe there is more happening in MY body.

I was diagnosed with vasculitis in 2022 and with IBD ulcerative colitis in 2023 (didn’t have typical symptoms; colonoscopy revealed disease.)

It is difficult to be be told or continue to read that this has “undetermined significance” and is asymptomatic when I am sick, fatigued, running fevers, aching, “crashing” after activities, and experiencing sensory neuropathy or numbness in hands, wrists, and feet, lower legs and have several autoimmune conditions.

SOMETHING insidious is going on and so far my blood work doesn’t show much beyond the MGUS and low levels of markers in several autoimmune disorder categories and that treatment with Synthroid relieved/improved
many hypothyroidism symptoms.

I wonder all the time what is really happening.

The work I was pursuing with a rheumatologist and dermatologist came to a halt with the arrival of SARS Co-V2 as “elective” appointments were kind of shut down.
Since then I lost my rheumatologist, neurologist, and hematologist with whom I had developed rapport and trust.

Starting over is difficult. So far I have not found great help in the specialist dept.

I have been reading some research regarding the effect rheumatological and autoimmune disease have on the progression of MGUS to MM or lymphoma.
(Risk statistics are increased.)

What I want to know is if there is something about MGUS that triggers the onset of these other, sometimes very debilitating, diseases.

How can a condition, MGUS, which even at a low level changes the chemistry of one’s blood, NOT affect the body? Plasma and blood health work to regulate so much of our health and functioning.

I post this not to frighten others nor to complain. It seems there is so much that is unknown. I just hope to find physicians willing to work on the puzzle pieces with me.

I wish you all good health and send virtual hugs with positive thoughts!

I’m so sorry you weren’t able to have continuity with your original doctor team. That’s frustrating and adds to your stress level, definitely.
It seems there’s an overarching disregulation in our bodies that is manifesting itself in different ways, and systemically. 🤔

My own journey with MGUS started in 2014 when my neurologist recognized the ratio between proteins in bloodwork was “off” and ordered serum protein electrophoresis for me at the age of 43.

Though my IGg Mspike (κ light chain)
and bone marrow % have remained low, my numbers fluctuate a lot. Sometimes doctors have been hopeful that it will burn out and disappear. But then it will rise again, and maybe a few months later rise some more and then drop the next time we check.

They call this asymptomatic.

My intuition about my body and the myriad autoimmune symptoms/
manifestations and overall poor health, frequent difficult infections (and even with something like raging kidney infections requiring surgery did not create a rise in white blood cell counts), et cetera lead me to believe there is more happening in MY body.

I was diagnosed with vasculitis in 2022 and with IBD ulcerative colitis in 2023 (didn’t have typical symptoms; colonoscopy revealed disease.)

It is difficult to be be told or continue to read that this has “undetermined significance” and is asymptomatic when I am sick, fatigued, running fevers, aching, “crashing” after activities, and experiencing sensory neuropathy or numbness in hands, wrists, and feet, lower legs and have several autoimmune conditions.

SOMETHING insidious is going on and so far my blood work doesn’t show much beyond the MGUS and low levels of markers in several autoimmune disorder categories and that treatment with Synthroid relieved/improved
many hypothyroidism symptoms.

I wonder all the time what is really happening.

The work I was pursuing with a rheumatologist and dermatologist came to a halt with the arrival of SARS Co-V2 as “elective” appointments were kind of shut down.
Since then I lost my rheumatologist, neurologist, and hematologist with whom I had developed rapport and trust.

Starting over is difficult. So far I have not found great help in the specialist dept.

I have been reading some research regarding the effect rheumatological and autoimmune disease have on the progression of MGUS to MM or lymphoma.
(Risk statistics are increased.)

What I want to know is if there is something about MGUS that triggers the onset of these other, sometimes very debilitating, diseases.

How can a condition, MGUS, which even at a low level changes the chemistry of one’s blood, NOT affect the body? Plasma and blood health work to regulate so much of our health and functioning.

I post this not to frighten others nor to complain. It seems there is so much that is unknown. I just hope to find physicians willing to work on the puzzle pieces with me.

I wish you all good health and send virtual hugs with positive thoughts!

My own journey with MGUS started in 2014 when my neurologist recognized the ratio between proteins in bloodwork was “off” and ordered serum protein electrophoresis for me at the age of 43.

Though my IGg Mspike (κ light chain)
and bone marrow % have remained low, my numbers fluctuate a lot. Sometimes doctors have been hopeful that it will burn out and disappear. But then it will rise again, and maybe a few months later rise some more and then drop the next time we check.

They call this asymptomatic.

My intuition about my body and the myriad autoimmune symptoms/
manifestations and overall poor health, frequent difficult infections (and even with something like raging kidney infections requiring surgery did not create a rise in white blood cell counts), et cetera lead me to believe there is more happening in MY body.

I was diagnosed with vasculitis in 2022 and with IBD ulcerative colitis in 2023 (didn’t have typical symptoms; colonoscopy revealed disease.)

It is difficult to be be told or continue to read that this has “undetermined significance” and is asymptomatic when I am sick, fatigued, running fevers, aching, “crashing” after activities, and experiencing sensory neuropathy or numbness in hands, wrists, and feet, lower legs and have several autoimmune conditions.

SOMETHING insidious is going on and so far my blood work doesn’t show much beyond the MGUS and low levels of markers in several autoimmune disorder categories and that treatment with Synthroid relieved/improved
many hypothyroidism symptoms.

I wonder all the time what is really happening.

The work I was pursuing with a rheumatologist and dermatologist came to a halt with the arrival of SARS Co-V2 as “elective” appointments were kind of shut down.
Since then I lost my rheumatologist, neurologist, and hematologist with whom I had developed rapport and trust.

Starting over is difficult. So far I have not found great help in the specialist dept.

I have been reading some research regarding the effect rheumatological and autoimmune disease have on the progression of MGUS to MM or lymphoma.
(Risk statistics are increased.)

What I want to know is if there is something about MGUS that triggers the onset of these other, sometimes very debilitating, diseases.

How can a condition, MGUS, which even at a low level changes the chemistry of one’s blood, NOT affect the body? Plasma and blood health work to regulate so much of our health and functioning.

I post this not to frighten others nor to complain. It seems there is so much that is unknown. I just hope to find physicians willing to work on the puzzle pieces with me.

I wish you all good health and send virtual hugs with positive thoughts!

My own journey with MGUS started in 2014 when my neurologist recognized the ratio between proteins in bloodwork was “off” and ordered serum protein electrophoresis for me at the age of 43.

Though my IGg Mspike (κ light chain)
and bone marrow % have remained low, my numbers fluctuate a lot. Sometimes doctors have been hopeful that it will burn out and disappear. But then it will rise again, and maybe a few months later rise some more and then drop the next time we check.

They call this asymptomatic.

My intuition about my body and the myriad autoimmune symptoms/
manifestations and overall poor health, frequent difficult infections (and even with something like raging kidney infections requiring surgery did not create a rise in white blood cell counts), et cetera lead me to believe there is more happening in MY body.

I was diagnosed with vasculitis in 2022 and with IBD ulcerative colitis in 2023 (didn’t have typical symptoms; colonoscopy revealed disease.)

It is difficult to be be told or continue to read that this has “undetermined significance” and is asymptomatic when I am sick, fatigued, running fevers, aching, “crashing” after activities, and experiencing sensory neuropathy or numbness in hands, wrists, and feet, lower legs and have several autoimmune conditions.

SOMETHING insidious is going on and so far my blood work doesn’t show much beyond the MGUS and low levels of markers in several autoimmune disorder categories and that treatment with Synthroid relieved/improved
many hypothyroidism symptoms.

I wonder all the time what is really happening.

The work I was pursuing with a rheumatologist and dermatologist came to a halt with the arrival of SARS Co-V2 as “elective” appointments were kind of shut down.
Since then I lost my rheumatologist, neurologist, and hematologist with whom I had developed rapport and trust.

Starting over is difficult. So far I have not found great help in the specialist dept.

I have been reading some research regarding the effect rheumatological and autoimmune disease have on the progression of MGUS to MM or lymphoma.
(Risk statistics are increased.)

What I want to know is if there is something about MGUS that triggers the onset of these other, sometimes very debilitating, diseases.

How can a condition, MGUS, which even at a low level changes the chemistry of one’s blood, NOT affect the body? Plasma and blood health work to regulate so much of our health and functioning.

I post this not to frighten others nor to complain. It seems there is so much that is unknown. I just hope to find physicians willing to work on the puzzle pieces with me.

I wish you all good health and send virtual hugs with positive thoughts!

Thank you, Patty. I was seeing a hematologist because of anemia issues. He sent me to a nephrologist because he didn't like the kidney function (been on pain meds for many years due to back issues). Nephrologist ran tons of bloodwork. When I met with him, he pointed out the monoclonal ism lambda rate (03 g/dl) which I don't understand. His first word was it's probably MM and chemo treatments. I just freaked. I see the hematologist/oncologist on Monday. I've been a mess since getting this information. I feel much better after reading your answer here. I just felt like I'd been given a death sentence. I'm frustrated with the nephrologist making such a jump, instead of letting me just get back with the hematologist/oncologist and talking about this. I so appreciate your information. I hope I get a good report on Monday when I go back. Right now, I'm scared.

Hi @kbluegrass, you are taking the bull by the horns here. I think we all could feel better and have better outcomes if we ate healthier and exercised. There is a lot of information about the benefits and efficacy of nutritional supplements. If you are taking Turmeric or curcumin, they say it might reduce blood glucose and increase the risk of hypoglycaemia, especially if you are also taking Metformin. Maybe something to watch out for. I have read about that because of my type 2 Diabetes. Maybe it wouldn’t be a concern for you.
It’s so hard to process all of the information you read (Dr Google) as some of it is contradictory, and there is some just plain bad information floating around. I’m sure my hem/onc doc has met the sainthood criteria as I have lists of written questions when I see him. He’s very patient with me. I’m three years into my MGUS diagnosis and am now seen every six months, having been seen every three months for the first two years. My “numbers” have been very stable which is a good thing.
The hardest part for me after they started throwing words like “multiple myeloma, smoldering” and “Monoclonal gammopathy of undetermined significance” around was keeping my head from exploding with raw anxiety. Thankfully, the risk of progression is low.
Everyone who participates in this forum has a unique medical profile, some with comorbidities and nobody’s situation is exactly the same. Anxiety is common among us when this is new to us. It gets easier.
I hope you have found an experienced and thorough clinician to work with. It’s important to have confidence in that relationship and be able to ask questions and discuss strategies until the two of you have a plan. If not, keep looking.
I love your positivity and see that you are very proactive. Let us know how your bone biopsy turns out. Wishing you the best possible outcome.
Patty

Slowly rising, 284 lambda now k/l quotient 0.04 now!
Still waiting thank goodness

Looks like they found the TP 53 mutation in only 9% of the cells. I don’t see anything else.
The significance of this small amount isn’t clear.