MGUS: Please, let me know I not alone

Posted by bonnie canby @bonniecanby, May 21, 2012

i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc's and a lot of pain. please let me know that I am not alone. bonne

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

@afc

Recently diagnosed with MGUS and need advice.....physicians, nutrition, etc.

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Suggest browsing old MGUS posts.
There are many of us.
You are not alone.
I was diagnosed with IgM Kappa MGUS seven years ago. Just something to keep track of, that's all. Find a hematologist you like, and be monitored via blood tests as often as they recommend.

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@grannycrop

Can someone tell me if you are born with mgus and only certain tests pick it up or does it develop as you grow older?

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Hi @grannycrop Monoclonal gammopathy of undetermined significance (MGUS) can develop as a person ages in which an abnormal protein — known as monoclonal protein or M protein — is in your blood.

Here are a couple of links from the Mayo website and one from Healthline.com that gives you a little more information about the disease.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367
https://www.healthline.com/health/how-serious-is-mgus#treatment
Were you diagnosed with MGUS?

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@kathy115

Great idea- good for you. There is nothing more cleansing than being in nature.

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Can someone tell me if you are born with mgus and only certain tests pick it up or does it develop as you grow older?

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@pcb

Ha! I actually postponed my work meeting so that I could take a walk in the park. It is beautiful sunny fall day and the smell of the wet leaves is wonderful! Thank you for your kind response. Stay well

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Great idea- good for you. There is nothing more cleansing than being in nature.

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@gingerw

@pcb Just as @pmm mentioned, tell your doctor you are anxious about your situation, that you want to hear from him/her that everything is going well. Sometimes doctors forget that what is so familiar to them is a mystery to us as a patient, and they need to be reminded. It will make a better relationship with your medical team.

I had MGUS that unfortunately evolved to smoldering myeloma and then into multiple myeloma. As I tell people, my case is not the normal timeline at all. I have other health concerns, too. And, being an overachiever all my life, that extends to health conditions. The vast majority of people go a long time with no indication of MGUS becoming more of a concern.
Ginger

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Thank you for your kind response. I am sorry for the course your mgus has taken. Take kind care of yourself.

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@pcb

The blood work has been done every six months. My doctor is excellent but does not have the time to explain everything much less deal with my confusion and fears. I don’t know anyone else with mgus and have been doing research on my own so I’m relieved to have found this group. Thanks

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@pcb Just as @pmm mentioned, tell your doctor you are anxious about your situation, that you want to hear from him/her that everything is going well. Sometimes doctors forget that what is so familiar to them is a mystery to us as a patient, and they need to be reminded. It will make a better relationship with your medical team.

I had MGUS that unfortunately evolved to smoldering myeloma and then into multiple myeloma. As I tell people, my case is not the normal timeline at all. I have other health concerns, too. And, being an overachiever all my life, that extends to health conditions. The vast majority of people go a long time with no indication of MGUS becoming more of a concern.
Ginger

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@pmm

Doctors are busy. It is their job, however, to treat you. All of you. Anxiety can raise your white count and make you actually feel sick. Schedule some time for a consultation and write down all your questions in advance.
If your doc can’t spend that time with you ask him or her for a referral to another doctor.
I worked in a busy teaching hospital for 15 years and as a medical social worker I arranged for thousands of these conversations.
The mind-body thing is real. It is normal to feel anxious after getting this diagnosis. Even after a year+ I can still get a little crazy with the “what ifs.” When I feel my calm eroding I pull it back. Time with nature, friends, fun stuff I enjoy, music, exercise…(okay, not enough exercise)…projects at home, community involvement, cooking and when all else fails, talking to a therapist.
Just don’t sit with it and feel miserable.
As time goes on you relax more and it’s easier.
Hugs.
Patty

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Ha! I actually postponed my work meeting so that I could take a walk in the park. It is beautiful sunny fall day and the smell of the wet leaves is wonderful! Thank you for your kind response. Stay well

REPLY
@pcb

The blood work has been done every six months. My doctor is excellent but does not have the time to explain everything much less deal with my confusion and fears. I don’t know anyone else with mgus and have been doing research on my own so I’m relieved to have found this group. Thanks

Jump to this post

Doctors are busy. It is their job, however, to treat you. All of you. Anxiety can raise your white count and make you actually feel sick. Schedule some time for a consultation and write down all your questions in advance.
If your doc can’t spend that time with you ask him or her for a referral to another doctor.
I worked in a busy teaching hospital for 15 years and as a medical social worker I arranged for thousands of these conversations.
The mind-body thing is real. It is normal to feel anxious after getting this diagnosis. Even after a year+ I can still get a little crazy with the “what ifs.” When I feel my calm eroding I pull it back. Time with nature, friends, fun stuff I enjoy, music, exercise…(okay, not enough exercise)…projects at home, community involvement, cooking and when all else fails, talking to a therapist.
Just don’t sit with it and feel miserable.
As time goes on you relax more and it’s easier.
Hugs.
Patty

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@gingerw

@pcb Welcome to Mayo Clinic Connect! When we get a diagnosis that may lead to additional issues, it is normal for our minds to run off and possibly create worst-case scenarios. Been there, done that! Please take a deep breath and relax.

I'm glad you have read posts here that show you many people go for a very long time with no advancement of disease. How often are you getting bloodwork to monitor your condition? Any questions you have for us?!
Ginger

Jump to this post

The blood work has been done every six months. My doctor is excellent but does not have the time to explain everything much less deal with my confusion and fears. I don’t know anyone else with mgus and have been doing research on my own so I’m relieved to have found this group. Thanks

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@pcb

Thanks! I was diagnosed with mgus last fall and I feel so much stress and depression wondering what the next step will be. I am relieved to her about someone who has not experienced a next step. Stay safe

Jump to this post

@pcb Welcome to Mayo Clinic Connect! When we get a diagnosis that may lead to additional issues, it is normal for our minds to run off and possibly create worst-case scenarios. Been there, done that! Please take a deep breath and relax.

I'm glad you have read posts here that show you many people go for a very long time with no advancement of disease. How often are you getting bloodwork to monitor your condition? Any questions you have for us?!
Ginger

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