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

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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@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

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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@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

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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@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

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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@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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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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@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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@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.

Jump to this post

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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