MGUS: Please, let me know I not alone
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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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.
Not older at all but okay
Mostly likely unrelated. Neuropathy is common in older people in any case.
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!
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! 👍🏻
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
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
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.
@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
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.,