Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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@harley22

Good question, but they made it seem like it’s nothing to worry about, and I’ve been having these nerve symptoms for 11 yrs now,progressing from my feet and going up my body.
I have an appt next week for labs,I will ask when I see doc, if it’s related to my MGUS.

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They say there is no symptoms with MGUS but I totally disagree as it was my symptoms that made them do tests for the diagnosis. I definitely believe my neuropathy is due to the MGUS

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@michaelah

Hi @laurinea, I understand what you are going through. My neuropathy started 18 months ago and diagnosed MGUS. Also found waldenstoms but my oncologist hadn't seen neuropathy this bad for WM so my neurologist ordered an Anti-MAG blood test, I was > 70000, so they put me on high dose prednisone (3 months so far). My neuropathy is improving - only below the knees now. So, it might be worth asking for this test. the more knowledge the better.

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I will be asking a lot of questions when I finally get to see someone. So far have only been give my diagnosis over the phone by the referring Dr (who knows little about MGUS) and the head nurse (she got special permission to tell me) at oncology as the Dr who did my bone marrow hadn't put my notes into the computer yet and was away when I rang.

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@laurinea

They say there is no symptoms with MGUS but I totally disagree as it was my symptoms that made them do tests for the diagnosis. I definitely believe my neuropathy is due to the MGUS

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According to the website mymyelomateam.com “A person living with MGUS can be expected to develop peripheral neuropathy .” I have read other articles stating the same and it has been the case with me as well, (diagnosed the MGUS in 2021) although mine is very mild and intermittent.

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Search for any Peer Reviewed published research on paraneoplastic syndrome and MGUS

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@1oldsoul

According to the website mymyelomateam.com “A person living with MGUS can be expected to develop peripheral neuropathy .” I have read other articles stating the same and it has been the case with me as well, (diagnosed the MGUS in 2021) although mine is very mild and intermittent.

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Hello:
It’s been 2 years since my surprise diagnosis- I think I’ve got some mild neuropathy in my toes and fingers- I think is neuropathy. It’s also worse at times- usually morning?
Other times it’s hardly perceptible.
I’ve been taking curcumin capsules (3 gm/day) and seems to help.
Thorne brand

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@paulatjohn738

Search for any Peer Reviewed published research on paraneoplastic syndrome and MGUS

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Thank you Paula! This is very interesting that MGUS can have to do with autoimmune disease. I wish more were researched and known.

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I have the same thing. I also have lots of pain in my back. My tongue is swollen with ridges as well.
Do you have this?

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@oliviahutson

I have the same thing. I also have lots of pain in my back. My tongue is swollen with ridges as well.
Do you have this?

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I’m sorry you have pain in your back and something going on with your tongue. I guess I’d check with your doctor for those?
I don’t have those symptoms.

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@leslie2121

I’m sorry you have pain in your back and something going on with your tongue. I guess I’d check with your doctor for those?
I don’t have those symptoms.

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Many biopsies coming up at Mayo, for Amyloidosis.

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@oliviahutson

Many biopsies coming up at Mayo, for Amyloidosis.

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That’s what I was as thinking. It’s supposed to be very treatable especially when caught early. All the best to you! Let us know okay? 🥹

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