1. < Blood Cancers & Disorders

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

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ea1 | @ea1 | Nov 19, 2022
In reply to @pdyer134 "I’ve had idiopathic neuropathy for 6 years which has progressed a lot as of late. I..." + (show)
@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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Sorry to hear that your Neuropathy has progressed over the past 6 years. Do you have IgG, IgA or IgM monoclonal protein? IgM is responsible for Neuropathy in most cases but less likely with IgG or IgA. I have IgG MGUS and my neuropathy has slightly progressed for the past 4 years. Nerve conduction studies should also show the type of Neuropathy

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1 reply
pdyer134 | @pdyer134 | Nov 19, 2022
In reply to @ea1 "Sorry to hear that your Neuropathy has progressed over the past 6 years. Do you have..." + (show)
@ea1

Sorry to hear that your Neuropathy has progressed over the past 6 years. Do you have IgG, IgA or IgM monoclonal protein? IgM is responsible for Neuropathy in most cases but less likely with IgG or IgA. I have IgG MGUS and my neuropathy has slightly progressed for the past 4 years. Nerve conduction studies should also show the type of Neuropathy

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I was diagnosed with idiopathic small fiber neuropathy via a skin punch biopsy in 2017. My EMG last week at Mayo shows it has now progressed into large fiber as well. My MGUS results were the IGa type? Not sure of any correlation to neuropathy just searching for cause like so many idiopathic diagnosis. Thanks for reply! 👍🏻

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1 reply
pdyer134 | @pdyer134 | Nov 19, 2022
In reply to @ea1 "My Hematologist informed me that it is possible that I have had MGUS for many year...." + (show)
@ea1

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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That’s my hunch as well. That after this second opinion at MAYO all remains the same, idiopathic neuropathy from something, just can’t pinpoint what expect all the normal talking points. Thanks!

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ea1 | @ea1 | Nov 19, 2022
In reply to @pdyer134 "I was diagnosed with idiopathic small fiber neuropathy via a skin punch biopsy in 2017. My..." + (show)
@pdyer134

I was diagnosed with idiopathic small fiber neuropathy via a skin punch biopsy in 2017. My EMG last week at Mayo shows it has now progressed into large fiber as well. My MGUS results were the IGa type? Not sure of any correlation to neuropathy just searching for cause like so many idiopathic diagnosis. Thanks for reply! 👍🏻

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Mostly likely unrelated. Neuropathy is common in older people in any case.

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2 replies
pdyer134 | @pdyer134 | Nov 19, 2022
In reply to @ea1 "Mostly likely unrelated. Neuropathy is common in older people in any case." + (show)
@ea1

Mostly likely unrelated. Neuropathy is common in older people in any case.

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Not older at all but okay

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pdyer134 | @pdyer134 | Nov 19, 2022
In reply to @ea1 "Mostly likely unrelated. Neuropathy is common in older people in any case." + (show)
@ea1

Mostly likely unrelated. Neuropathy is common in older people in any case.

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If you think debilitating neuropathy at 46 is common I disagree as I know no one wise with it under 70. But everyone has an opinion.

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Kay Rovik | @anniemaggie | Nov 20, 2022
In reply to @pdyer134 "I’ve had idiopathic neuropathy for 6 years which has progressed a lot as of late. I..." + (show)
@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.,

Jump to this post

I have smoldering MGUS which was diagnosed on a blood test by accident in 2003. There really have been no changes. I started seeing the cancer Drs twice yearly depending where I lived, as I moved around. Some Drs want me in twice yearly, other's once. I also had to have an iron transfusion, as my ferritin got really low. So far all ok.

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1 reply
pdyer134 | @pdyer134 | Nov 20, 2022
In reply to @anniemaggie "I have smoldering MGUS which was diagnosed on a blood test by accident in 2003. There..." + (show)
@anniemaggie

I have smoldering MGUS which was diagnosed on a blood test by accident in 2003. There really have been no changes. I started seeing the cancer Drs twice yearly depending where I lived, as I moved around. Some Drs want me in twice yearly, other's once. I also had to have an iron transfusion, as my ferritin got really low. So far all ok.

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Thank you. My iron is also extremely low? Maybe correlation?

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1 reply
Kay Rovik | @anniemaggie | Nov 20, 2022
In reply to @pdyer134 "Thank you. My iron is also extremely low? Maybe correlation?" + (show)
@pdyer134

Thank you. My iron is also extremely low? Maybe correlation?

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Follow your doctors recommendations and you should be ok. I wouldn't get so scared, but I always look at life that it could be worse, like your child or a close friend. If you look at my profile you will see why I say this. I have had so much going on in my life. It could be worse, & there's nothing you can do about it.

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1 reply
Kay Rovik | @anniemaggie | Dec 2, 2022
In reply to @anniemaggie "Follow your doctors recommendations and you should be ok. I wouldn't get so scared, but I..." + (show)
@anniemaggie

Follow your doctors recommendations and you should be ok. I wouldn't get so scared, but I always look at life that it could be worse, like your child or a close friend. If you look at my profile you will see why I say this. I have had so much going on in my life. It could be worse, & there's nothing you can do about it.

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I remembered what my Dr said once, he said it isn't rare any more. Only because it is being diagnosed earlier and better.

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