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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oliviahutson | @oliviahutson | Oct 19, 2023

In reply to @leslie2121 "I’m sorry you have pain in your back and something going on with your tongue. I..." + (show)

Many biopsies coming up at Mayo, for Amyloidosis.

2121 | @leslie2121 | Oct 19, 2023

In reply to @oliviahutson "I have the same thing. I also have lots of pain in my back. My tongue..." + (show)

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.

oliviahutson | @oliviahutson | Oct 18, 2023

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?

teedlum | @teedlum | Oct 18, 2023

In reply to @paulatjohn738 "Search for any Peer Reviewed published research on paraneoplastic syndrome and MGUS" + (show)

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

2121 | @leslie2121 | Oct 17, 2023

In reply to @1oldsoul "According to the website mymyelomateam.com “A person living with MGUS can be expected to develop peripheral..." + (show)

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

paulatjohn738 | @paulatjohn738 | Oct 17, 2023

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

1oldsoul | @1oldsoul | Oct 16, 2023

In reply to @laurinea "They say there is no symptoms with MGUS but I totally disagree as it was my..." + (show)

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.

laurinea | @laurinea | Oct 15, 2023

In reply to @michaelah "Hi @laurinea, I understand what you are going through. My neuropathy started 18 months ago and..." + (show)

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.

laurinea | @laurinea | Oct 15, 2023

In reply to @harley22 "Good question, but they made it seem like it’s nothing to worry about, and I’ve been..." + (show)

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

laurinea | @laurinea | Oct 15, 2023

In reply to @denisegs "I also have night sweats as well as day sweats. When I perspire the odor is..." + (show)

That isn't good, I have no specific odour with my sweats.

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