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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for mikxtr @mikxtr

@mphaddican Why request am IGM score?And what is it it?

Jump to this post

@mikxtr lab results for MGUS, Smoldering Multiple Myeloma or Multiple Myeloma can be complex and you really need to get your physician to explain, but I found this information helpful.
MGUS is a precursor blood disorder to Multiple Myeloma. It’s important to remember, however, that not all MGUS patients will get Multiple Myeloma. Many of us will live long lives without ever progressing. Some of our members have had MGUS for decades. The chance of progression is very low. It’s important to keep things in perspective.
Final point is made by my hem/onc doc all the time. Anxiety is not my friend. I should remember that in the unlikely event my MGUS does progress to multiple myeloma, it is treatable. Medical research has made significant gains. Huzzah! Hope this helps.

RE: Lab results

Understanding Your Lab Results
Multiple myeloma is a cancer of the blood—and the results of blood and other lab tests are important for diagnosing and monitoring multiple myeloma.

Your doctor or nurse will need to test your blood or urine on a regular schedule to see exactly how multiple myeloma affects you. These lab tests will help tell your doctor or nurse if your multiple myeloma is under control.
Below is a list of lab tests that are commonly used to keep an eye on multiple myeloma. Use the chart to help you better understand your results. Many of these terms and tests may be unfamiliar—you can read more about them in the glossary.
As you review these charts, please remember that “normal” ranges may vary slightly from lab to lab. Always rely on your doctor for a full explanation of what your results may mean.
LABORATORY ASSESSMENT
Serum Protein Electrophoresis

Protein
Normal rangea
6-8 g/dL
Albumin
3.3-5.7 g/dL
α1-Globulin
0.1-0.4 g/dL
α2-Globulin
0.3-0.9 g/dL
β-Globulin
0.7-1.5 g/dL
γ-Globulin
0.5-1.4 g/dL
Immunoglobulin, Serum

IgA
Normal rangea
61-356 mg/dL
IgG
76 7- 15 90 mg/dL
IgM
37-286 mg/dL
Chemistry Profile
Blood urea nitrogen (BUN)
Normal rangea7-20 mg/dL
Creatinine
Normal rangea0.6-1.3 mg/dL
Calcium
Normal rangea9-10.5 mg/dL
Creatinine clearance
Normal rangea
Males: 97-137 mL/min
Females: 88-128 mL/min
Glucose, fasting
Normal rangea70-100 mg/dL
Lactate dehydrogenase (LDH)
Normal rangea105-333 IU/L
Estimated glomerular filtration rate (eGFR)
Normal rangea
90-120 mL/min/1.73 m2
Serum-Free Light Chains
Free kappa
Normal rangea3.3-19.4 mg/dL
Free lambda
Normal rangea5.71-26.3 mg/dL
Kappa/lambda ratio
Normal rangea0.26-1.65
β2 -Microglobulin (B2M)
Normal rangea0.70-1.80 mg/dL
Complete Blood Count (CBC) With Differential
White blood cell count (WBC)
Normal rangea3.5-10.5 x 109/L
Red blood cell count (RBC)
Normal rangea
Males: 4.32-5.72 x 1012/L
Females: 3.90-5.03 x 1012/L
Hemoglobin (Hgb)
Normal rangea
Males: 13.5-17.5 g/dL (135-175 g/L)
Females: 12.0-15.5 g/dL (120-155 g/L)
Hematocrit (HCT)
Normal rangea
Males: 38.8%-50.0%
Females: 34.9%-44.5%
Mean corpuscular volume (MCV)
Normal rangea79.0-101.0 fL
Mean corpuscular hemoglobin (MCH)
Normal rangea25.0-35.0 pg
Mean corpuscular hemoglobin concentration (MCHC)
Normal rangea31.0-37.0 g/dL
Red blood cell distribution width (RDW)
Normal rangea11.0%-16.0%
Platelets
Normal rangea150-450 x 109/L
Lymphocytes
Normal rangea24%-44%
Monocytes
Normal rangea1.0%-10.0%
Absolute neutrophil count (ANC)
Normal rangea1.7-7.0 x 109/L
Urine protein electrophoresis
Protein
< 167 mg/24 hours
Albumin
< 5 mg/dL
α1-Globulin
0%
α2-Globulin
0%
β-Globulin
0%
γ-Globulin
0%
aLab values are ranges based on individual labs; values may vary slightly from lab to lab.
Always discuss your test results with your healthcare team and make sure to ask questions to fully understand what they mean.

Does this help? Hugs.

REPLY
Profile picture for Patty, Volunteer Mentor @pmm

@mikxtr lab results for MGUS, Smoldering Multiple Myeloma or Multiple Myeloma can be complex and you really need to get your physician to explain, but I found this information helpful.
MGUS is a precursor blood disorder to Multiple Myeloma. It’s important to remember, however, that not all MGUS patients will get Multiple Myeloma. Many of us will live long lives without ever progressing. Some of our members have had MGUS for decades. The chance of progression is very low. It’s important to keep things in perspective.
Final point is made by my hem/onc doc all the time. Anxiety is not my friend. I should remember that in the unlikely event my MGUS does progress to multiple myeloma, it is treatable. Medical research has made significant gains. Huzzah! Hope this helps.

RE: Lab results

Understanding Your Lab Results
Multiple myeloma is a cancer of the blood—and the results of blood and other lab tests are important for diagnosing and monitoring multiple myeloma.

Your doctor or nurse will need to test your blood or urine on a regular schedule to see exactly how multiple myeloma affects you. These lab tests will help tell your doctor or nurse if your multiple myeloma is under control.
Below is a list of lab tests that are commonly used to keep an eye on multiple myeloma. Use the chart to help you better understand your results. Many of these terms and tests may be unfamiliar—you can read more about them in the glossary.
As you review these charts, please remember that “normal” ranges may vary slightly from lab to lab. Always rely on your doctor for a full explanation of what your results may mean.
LABORATORY ASSESSMENT
Serum Protein Electrophoresis

Protein
Normal rangea
6-8 g/dL
Albumin
3.3-5.7 g/dL
α1-Globulin
0.1-0.4 g/dL
α2-Globulin
0.3-0.9 g/dL
β-Globulin
0.7-1.5 g/dL
γ-Globulin
0.5-1.4 g/dL
Immunoglobulin, Serum

IgA
Normal rangea
61-356 mg/dL
IgG
76 7- 15 90 mg/dL
IgM
37-286 mg/dL
Chemistry Profile
Blood urea nitrogen (BUN)
Normal rangea7-20 mg/dL
Creatinine
Normal rangea0.6-1.3 mg/dL
Calcium
Normal rangea9-10.5 mg/dL
Creatinine clearance
Normal rangea
Males: 97-137 mL/min
Females: 88-128 mL/min
Glucose, fasting
Normal rangea70-100 mg/dL
Lactate dehydrogenase (LDH)
Normal rangea105-333 IU/L
Estimated glomerular filtration rate (eGFR)
Normal rangea
90-120 mL/min/1.73 m2
Serum-Free Light Chains
Free kappa
Normal rangea3.3-19.4 mg/dL
Free lambda
Normal rangea5.71-26.3 mg/dL
Kappa/lambda ratio
Normal rangea0.26-1.65
β2 -Microglobulin (B2M)
Normal rangea0.70-1.80 mg/dL
Complete Blood Count (CBC) With Differential
White blood cell count (WBC)
Normal rangea3.5-10.5 x 109/L
Red blood cell count (RBC)
Normal rangea
Males: 4.32-5.72 x 1012/L
Females: 3.90-5.03 x 1012/L
Hemoglobin (Hgb)
Normal rangea
Males: 13.5-17.5 g/dL (135-175 g/L)
Females: 12.0-15.5 g/dL (120-155 g/L)
Hematocrit (HCT)
Normal rangea
Males: 38.8%-50.0%
Females: 34.9%-44.5%
Mean corpuscular volume (MCV)
Normal rangea79.0-101.0 fL
Mean corpuscular hemoglobin (MCH)
Normal rangea25.0-35.0 pg
Mean corpuscular hemoglobin concentration (MCHC)
Normal rangea31.0-37.0 g/dL
Red blood cell distribution width (RDW)
Normal rangea11.0%-16.0%
Platelets
Normal rangea150-450 x 109/L
Lymphocytes
Normal rangea24%-44%
Monocytes
Normal rangea1.0%-10.0%
Absolute neutrophil count (ANC)
Normal rangea1.7-7.0 x 109/L
Urine protein electrophoresis
Protein
< 167 mg/24 hours
Albumin
< 5 mg/dL
α1-Globulin
0%
α2-Globulin
0%
β-Globulin
0%
γ-Globulin
0%
aLab values are ranges based on individual labs; values may vary slightly from lab to lab.
Always discuss your test results with your healthcare team and make sure to ask questions to fully understand what they mean.

Does this help? Hugs.

Jump to this post

@pmm oh I see. So they were just asking for metrics for a particular immunoglobulin. Thanks.

REPLY
Profile picture for mphaddican @mphaddican

Sorry to be so vague. I am not a physician but my husband was diagnosed with MGUS many years ago. He finally made an appointment Dana Farber. His blood test showed an IGM high level and it indicted that he had Walldenstroms. It is very rare .
If the IGM is high it can indicate that. Don’t be afraid I am just throwing that out there. It is rare and some times missed
On a good note he has had infusion treatments over 6 years ago and is doing fine. His level has been normal.
Mayo is very familiar with that disease and has been helpful too.
M

Jump to this post

@mphaddican Oh sorry. I just didn't get it but I see what you're saying now.

I'm sorry to hear about your husband. I hope the treatments work out for him.

REPLY
Profile picture for mphaddican @mphaddican

@ems2012

Thanks for your response.

Since my husband’s treatments through Dana Farber his IGM levels have been normal for the last 6 years. They did find out that 40% of those with WM have a gene that normal treatment does not work for so they adjusted the infusions with that in consideration for my husband. It worked.
My high praises for medical research and researchers! They have to function in these uncertain times and they seem laser focused! Thanks to all of them! 😀

Jump to this post

@mphaddican
Thank you for the post. Can you tell us how old your husband was at the time of treatment and if he had any side effects to the infusions? Do you remember if his IGA and IGG was low or out of range at the time of diagnosis?

REPLY

At the time of treatment my husband was 75 yrs old. He had 3 days of infusion for 4 months. 1st infusion slow and he was fine. The second month they had the infusion speed up and he reacted by shivering and they asked for a doctor who gave him a shot which stopped that reaction.The next two months his infusion was slow ( no reactions).
He only had high IGM that I am aware of. The count for IGM went from 1500 to 300 and has stayed in that normal range.
M

REPLY

Hola, me diagnosticaron GMSI a principios de 2023 a los 45 años y con 3 niños chicos... me angustié muchísimo, me lo descubrieron de "casualidad" en un control anual ginecolófgico, era el destino, mi gineólogo no sabe aún por qué me pidió un estudio que fue lo que llevó a otros estudios... Luego, una vez diagnosticada la GMSI con hematóloga, empecé a controlarme cada 6 meses y está bastante estable 0,8-0,9mg. Alguien podría facilitarme información de qué actividades o alimentación sería ideal consumir para que la proteína M no aumente en sangre? Saben si hay algo que hacer si no se tienen síntomas? Cómo llevan ustedes esta enfermedad y los miedos a que progrese en una enfermedad maligna en sangre? Tienen información sobre el período de perimenopausia y la GMSI? Gracias!

REPLY
Profile picture for vmpcay1977 @vmpcay1977

Hola, me diagnosticaron GMSI a principios de 2023 a los 45 años y con 3 niños chicos... me angustié muchísimo, me lo descubrieron de "casualidad" en un control anual ginecolófgico, era el destino, mi gineólogo no sabe aún por qué me pidió un estudio que fue lo que llevó a otros estudios... Luego, una vez diagnosticada la GMSI con hematóloga, empecé a controlarme cada 6 meses y está bastante estable 0,8-0,9mg. Alguien podría facilitarme información de qué actividades o alimentación sería ideal consumir para que la proteína M no aumente en sangre? Saben si hay algo que hacer si no se tienen síntomas? Cómo llevan ustedes esta enfermedad y los miedos a que progrese en una enfermedad maligna en sangre? Tienen información sobre el período de perimenopausia y la GMSI? Gracias!

Jump to this post

@vmpcay1977 Welcome to Mayo Connect! There are quite a few members in the forum who have been diagnosied with Monoclonal gammopathy of undetermined significance (MGUS) and many have the same questions that you have about the impact of diet in possibly slowing the progression.

Here are a couple of the links that I found regarding diet and MGUS.

MGUS diet: Any tips on food to enjoy or prevent progression?
https://connect.mayoclinic.org/discussion/mgus-bgus-diet/
What’s the science on diet and MGUS/SMM? https://connect.mayoclinic.org/discussion/whats-the-science-on-diet-and-mgussmm/

Being able to speak with other members with the same diagnosis can be so comforting. One more link for you…this is from a quick search of MGUS conversations! Please feel free to peruse the discussions and pop in with questions! https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=MGUS#discussion-listview

Do you feel this all started the same time as the perimenopause?

REPLY

I was diagnosed with MGUS in 2014 when I was 47. In 2015, I developed chronic hives that lasted a year. In 2020 I had chronic hives again that lasted about a year and in March of this year I broke out again and am still dealing with them everyday. People with MGUS who have other symptoms and develop hives are diagnosed with Schnitzler Syndrome. My allergy specialist doesn’t think it’s related to my MGUS because I don’t have the other symptoms. I have never had hives until I was diagnosed with MGUS. I have been tested for autoimmune diseases and they all have come back negative. I am so frustrated that they can’t figure out what is causing my chronic hives. Does anyone else with MGUS have chronic hives and doesn’t have a diagnosis for them?

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

@vmpcay1977 Welcome to Mayo Connect! There are quite a few members in the forum who have been diagnosied with Monoclonal gammopathy of undetermined significance (MGUS) and many have the same questions that you have about the impact of diet in possibly slowing the progression.

Here are a couple of the links that I found regarding diet and MGUS.

MGUS diet: Any tips on food to enjoy or prevent progression?
https://connect.mayoclinic.org/discussion/mgus-bgus-diet/
What’s the science on diet and MGUS/SMM? https://connect.mayoclinic.org/discussion/whats-the-science-on-diet-and-mgussmm/

Being able to speak with other members with the same diagnosis can be so comforting. One more link for you…this is from a quick search of MGUS conversations! Please feel free to peruse the discussions and pop in with questions! https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=MGUS#discussion-listview

Do you feel this all started the same time as the perimenopause?

Jump to this post

@loribmt Thank you so much for your response and comments. Of course, talking to people who suffer from the same thing is comforting, and it's good to share concerns and information. Thanks! Regarding your question, I couldn't specify that this diagnosis began with perimenopause, because this period started recently and I was diagnosed with MGUS in January 2023 by chance. I already had 0.8 mg of monoclonal protein, and during the semiannual checkups of the last two years, it hasn't increased yet 0,9mg. This makes me think it's something I've had for a while, if the curve has always behaved like it has the last two years since it was discovered. I hope it remains stable... God will provide.

REPLY
Profile picture for carolduggan @carolduggan

I was diagnosed with MGUS in 2014 when I was 47. In 2015, I developed chronic hives that lasted a year. In 2020 I had chronic hives again that lasted about a year and in March of this year I broke out again and am still dealing with them everyday. People with MGUS who have other symptoms and develop hives are diagnosed with Schnitzler Syndrome. My allergy specialist doesn’t think it’s related to my MGUS because I don’t have the other symptoms. I have never had hives until I was diagnosed with MGUS. I have been tested for autoimmune diseases and they all have come back negative. I am so frustrated that they can’t figure out what is causing my chronic hives. Does anyone else with MGUS have chronic hives and doesn’t have a diagnosis for them?

Jump to this post

@carolduggan, welcome. Using search terms MGUS and hives, I found these comments from other members:
https://connect.mayoclinic.org/search/comments/?search=MGUS%20and%20hives
How do you manage the hives when you experience an outbreak?

REPLY
Please sign in or register to post a reply.