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.

@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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@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

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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@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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@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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@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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@ea1

I was diagnosed with IgG MGUS prompted by my PN. After extensive blood and EMG tests, both the Hematologist and Neurologies don’t suspect the PN to be related to my MGUS. PN is more commonly associated with IgM MGUS than IgG or IgA as you can find in the literature.

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I’ve had idiopathic neuropathy for 6 years which has progressed a lot as of late. I decided to come to MAYO for a second opinion. When doing blood tests I came back for having MGUS. Everything I’m reading there appears to be a strong connection? I’m seeing neurologist on Tuesday.,

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@pdyer134

I’ve had idiopathic neuropathy for 6 years which has progressed a lot as of late. I decided to come to MAYO for a second opinion. When doing blood tests I came back for having MGUS. Everything I’m reading there appears to be a strong connection? I’m seeing neurologist on Tuesday.,

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@pdyer134 Welcome to Mayo Clinic Connect! You have joined the countless others who have their MGUS diagnosed when looking for something else. It really is a common way we find out about it.

What questions do you have for us? And, more importantly, how do you plan to take care of yourself this weekend while you wait for the appointment? I know all too well the anxiety pitfalls we can fall into waiting to talk to another medical professional!
Ginger

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Thanks for the reply. When I first received the result it was after my debrief with my doctor and when you look it up on the internet it looks a bit scary. I’m hoping it is just the dormant type as many on here mention. But more importantly I’m hoping this solves the mystery I originally came here for is the reason for my peripheral neuropathy which is accelerating very quickly. Not that it changes much but at least I’d know and that is why I came to MAYO.

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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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My Hematologist informed me that it is possible that I have had MGUS for many year. Wouldn’t be tested if not due to Neuropathy which is not related to MGUS in my case

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