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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I was diagnosed with MGUS in 2022 and CMT. Have had fibromyalghia for years and osteoarthritis, along with IBS, diverticulitis, etc. I have recently been diagnosed with biclonal gammopathy. I see my neurologist in July for discussion and exam. It is my understanding that biclonal gammopathy is rare. Have researched everything I can, but not much information. Please let me know if anyone has been diagnosed with this. Any input is appreciated.

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@jmvb23

I have MGUS. I was diagnosed several years ago and having blood work done every six months. About a year ago, I began having pain and heaviness in my legs. There were times I felt that I would fall. Blood work and tests by a Neurologist, showed I had neuropathy caused by MGUS. I went through infusions of Rituximab (?) which helped. I would be interested in learning how it has affected you.

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@jmvb23
Welcome to Mayo Connect. As you have time to read through comments, you’ll notice an amazing range of symptoms attributable to MGUS. We are each different but neuropathy seems to be common among us.
A lot depends on if there are concurrent conditions. I have type 2 diabetes which is well controlled by diet and medication. So is it the MGUS or the Diabetes that causes my neuropathy? Hard to tell.
Here is some information.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367

Do you have anything else besides the neuropathy?

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@mikxtr

I agree with you. Unfortunately, the specialists in my system do not. They wanted 2 tests within 6 months and then every few years! I pushed for a 3rd test and if numbers are not changing then I'll concede to annually. My PCP does talk with the specialists and has been supportive but I do notice some holes in her knowledge. I'm trying to be patient but it's a gatekeeper system so I have to play the game for a while.

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@mikxtr How frustrating! Not sure which specialists these people are, but if not a hematologist oncologist, please try to connect with one. As you have read, MGUS can be a no-to-slowly growing issue, and many people go many years without any advancement of disease status. But, it needs to be monitored.

In my case, I connected with a well known hematologist oncologist in the town where I lived. She had me testing every 3 months. Then decided to extend it to 6 months. And, during that time, I advanced to smoldering multiple myeloma. I would like to think she was very upset it fell through the cracks. Truth was, I was just on the cusp of moving 800 miles away, so she handed me off to my new oncologist. He is Mayo Clinic trained. He was concerned about the details of my case, and being the overachiever I am, within a year my situation advanced into active multiple myeloma. Very unusual, so please don't let this scare you.

Play the game you need to do, and keep pushing for your healthcare!
Ginger

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I have MGUS. I was diagnosed several years ago and having blood work done every six months. About a year ago, I began having pain and heaviness in my legs. There were times I felt that I would fall. Blood work and tests by a Neurologist, showed I had neuropathy caused by MGUS. I went through infusions of Rituximab (?) which helped. I would be interested in learning how it has affected you.

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@mikxtr

I agree with you. Unfortunately, the specialists in my system do not. They wanted 2 tests within 6 months and then every few years! I pushed for a 3rd test and if numbers are not changing then I'll concede to annually. My PCP does talk with the specialists and has been supportive but I do notice some holes in her knowledge. I'm trying to be patient but it's a gatekeeper system so I have to play the game for a while.

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Ugh I hate dealing with insurance and managed care. I’m glad you are diligent and doing good research. Fingers crossed for a good report next appointment. Let me know how it goes.

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@pmm

@mikxtr
Oh okay. I went another direction. Here’s the way I look at it. MGUS is not cancer but I want a specialist who works with MGUS and Multiple Myeloma patients every day. I think about it like I do my colonoscopy (yuck, sorry!). I want the gal who has done thousands rather than the first year resident or general practitioner.
I also want someone who has had more than a quick blood disorders rotation in med school. Hematologists complete med school and three year residency then in addition do a 3 to 5 year fellowship of specialized training. Blood disorders are complex and can have bone and soft tissue implications.
With all due respect to my excellent PCP, I want a specialist to diagnose and possibly eventually treat my MGUS if my numbers get wanky or if it advances.
I’m really glad your MGUS is low risk. How often will you get blood analysis?

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I agree with you. Unfortunately, the specialists in my system do not. They wanted 2 tests within 6 months and then every few years! I pushed for a 3rd test and if numbers are not changing then I'll concede to annually. My PCP does talk with the specialists and has been supportive but I do notice some holes in her knowledge. I'm trying to be patient but it's a gatekeeper system so I have to play the game for a while.

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@mikxtr

I *do* have MGUS, diagnosed summer last year. They consider me low risk and my M Spike did not change with the 2nd test (although both light chains did increase so nervous about that) so have not referred me. I did ask for a consultation with a Hematologist and he was incredibly dismissive because I'm low risk and have low level of M-protein.

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@mikxtr
Oh okay. I went another direction. Here’s the way I look at it. MGUS is not cancer but I want a specialist who works with MGUS and Multiple Myeloma patients every day. I think about it like I do my colonoscopy (yuck, sorry!). I want the gal who has done thousands rather than the first year resident or general practitioner.
I also want someone who has had more than a quick blood disorders rotation in med school. Hematologists complete med school and three year residency then in addition do a 3 to 5 year fellowship of specialized training. Blood disorders are complex and can have bone and soft tissue implications.
With all due respect to my excellent PCP, I want a specialist to diagnose and possibly eventually treat my MGUS if my numbers get wanky or if it advances.
I’m really glad your MGUS is low risk. How often will you get blood analysis?

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@gingerw

@mikxtr Attached here is some information from Cleveland Clinic, about low albumin, also called hypoalbumineria.

As a kidney disease patient, albumin for me is carefully monitored, as it indicates the level of blood plasma protein for me. I have to watch it carefully. Daily dialysis is a strain on my system, and the need for keeping good protein levels is critical. Eating a good healthy diet, that includes protein in appropriate quantities, helps.

Would you care to share what health issues you have? Low albumin can be contributed to several different health concerns, like liver or kidney issues, infections, stress, lupus, etc. You said you are of significant size, and I'm glad you are asking this question. Your primary care indicated malnutrition, but did he/she say anything else to ease your mind, like what to do now?

https://my.clevelandclinic.org/health/diseases/22529-hypoalbuminemia
Ginger

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Thank you for the link (and for all that you do! I think I missed you in my initial shout out to the MGUS/MM gurus here). I've been researching this for quite some time so I end up vacillating between liver concerns and kidney concerns. Close monitoring with daily dialysis (ooof) makes sense. The doctors have not said more than malnutrition. They dismissed it as a minor concern. I'm planning to discuss again if it continues to drop.

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@pmm

Ahhhh I apologize. I thought you have MGUS. Glad you have a follow up scheduled.

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I *do* have MGUS, diagnosed summer last year. They consider me low risk and my M Spike did not change with the 2nd test (although both light chains did increase so nervous about that) so have not referred me. I did ask for a consultation with a Hematologist and he was incredibly dismissive because I'm low risk and have low level of M-protein.

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@mikxtr

Quick question: does anyone else have low albumin? I asked about it and was told it indicated malnutrition. my significant size indicates otherwise. so I'm thinking either my liver isn't producing enough (uh oh) or I'm losing it to rapidly (uh oh).

Jump to this post

@mikxtr Attached here is some information from Cleveland Clinic, about low albumin, also called hypoalbumineria.

As a kidney disease patient, albumin for me is carefully monitored, as it indicates the level of blood plasma protein for me. I have to watch it carefully. Daily dialysis is a strain on my system, and the need for keeping good protein levels is critical. Eating a good healthy diet, that includes protein in appropriate quantities, helps.

Would you care to share what health issues you have? Low albumin can be contributed to several different health concerns, like liver or kidney issues, infections, stress, lupus, etc. You said you are of significant size, and I'm glad you are asking this question. Your primary care indicated malnutrition, but did he/she say anything else to ease your mind, like what to do now?

https://my.clevelandclinic.org/health/diseases/22529-hypoalbuminemia
Ginger

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