1. < Blood Cancers & Disorders

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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tatajess | @tatajess | Nov 26, 2023
In reply to @dazlin "@tatajess , I posted here too about my mgus, after I read yours...I have paint in..." + (show)
@dazlin

@tatajess , I posted here too about my mgus, after I read yours...I have paint in my feet, then my legs get very achey . I've had it on and off for years, now it's been back every day. Doesn't hurt during the night like yours, but gets worse throughout the day. I'm seeing my oncologist this Thursday...ill be happy to report back if he tells me anything that causes this, and what may help. I'm glad your being monitored and hope no progression!

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Thanku. For letting me know that. Did you do a bone density test. So you have had pain for some yrs. And you go to the Dr to check every 3 months or 6

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1 reply
canadabob | @canadabob | Nov 26, 2023

I also have leg and joint pain. The knees and hips. It’s not a bone on bone issue it’s seems more of a swelling issue.

I was diagnosed with MGUS 4 years ago and am still waiting to see a hematologist.

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dazlin | @dazlin | Nov 26, 2023
In reply to @tatajess "Thanku. For letting me know that. Did you do a bone density test. So you have..." + (show)
@tatajess

Thanku. For letting me know that. Did you do a bone density test. So you have had pain for some yrs. And you go to the Dr to check every 3 months or 6

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@tatajess , I have had bone density tests...I have osteoporosis. I posted here on there this thread a yesterday. You'll see answers to your questions.

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tatajess | @tatajess | Nov 26, 2023
In reply to @dazlin "@tatajess , I posted here too about my mgus, after I read yours...I have paint in..." + (show)
@dazlin

@tatajess , I posted here too about my mgus, after I read yours...I have paint in my feet, then my legs get very achey . I've had it on and off for years, now it's been back every day. Doesn't hurt during the night like yours, but gets worse throughout the day. I'm seeing my oncologist this Thursday...ill be happy to report back if he tells me anything that causes this, and what may help. I'm glad your being monitored and hope no progression!

Jump to this post

Oh. Yes. Ok. I read your comment. How long have you had mgus. That you know of

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tatajess | @tatajess | Nov 26, 2023

This is so scary. How are u getting around. With the osteopeeosis

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1 reply
dazlin | @dazlin | Nov 26, 2023
In reply to @tatajess "This is so scary. How are u getting around. With the osteopeeosis" + (show)
@tatajess

This is so scary. How are u getting around. With the osteopeeosis

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@tatajess , I've been diagnosed with mgus over 5 yrs ago, I'd have to check my portal to be exact. I think its more than 5 yrs. I'm a patient at Mayo clinic, and it was found while checking for something else. #'s fluctuate, and last 2 trs it's been very slight, they haven't even quantitate because it dropped to a trace. It can spike too, so thats why we watch it. I have no symptoms associated with it, like anemia, kidney, calcium, etc.
Drs haven't said whether fatigue and aches are connected either.
I started to going to Mayo 10 yrs ago for widespread severe rashes...I still get, but not severe. No answers if any connection.
Osteoporosis, I feel fine...I do everything, and I'm considered high risk fracture. I honestly have no idea what's causing my aches and burning achey feet...ill ask Thursday. I had a super great dr there, left no stone unturned, but he's not practicing right now. I'm seeing another Dr who also seems thorough, and caring, so im praying about my follow-up.
I know you said your scared...but let's take it one day at a time. You could remain stable for years, so why not let tomorrow worry about itself...enjoy today. Treatment these days, seems very positive too.

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1 reply
dazlin | @dazlin | Nov 26, 2023
In reply to @canadabob "I also have leg and joint pain. The knees and hips. It’s not a bone on..." + (show)
@canadabob

I also have leg and joint pain. The knees and hips. It’s not a bone on bone issue it’s seems more of a swelling issue.

I was diagnosed with MGUS 4 years ago and am still waiting to see a hematologist.

Jump to this post

@canadabob , sorry to hear this...I dont understand why your not under the care of a hematologist??
The swelling could be connected to different types of conditions...there are also different types of mgus. I have IGG KAPPA.

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1 reply
tatajess | @tatajess | Nov 26, 2023
In reply to @dazlin "@tatajess , I've been diagnosed with mgus over 5 yrs ago, I'd have to check my..." + (show)
@dazlin

@tatajess , I've been diagnosed with mgus over 5 yrs ago, I'd have to check my portal to be exact. I think its more than 5 yrs. I'm a patient at Mayo clinic, and it was found while checking for something else. #'s fluctuate, and last 2 trs it's been very slight, they haven't even quantitate because it dropped to a trace. It can spike too, so thats why we watch it. I have no symptoms associated with it, like anemia, kidney, calcium, etc.
Drs haven't said whether fatigue and aches are connected either.
I started to going to Mayo 10 yrs ago for widespread severe rashes...I still get, but not severe. No answers if any connection.
Osteoporosis, I feel fine...I do everything, and I'm considered high risk fracture. I honestly have no idea what's causing my aches and burning achey feet...ill ask Thursday. I had a super great dr there, left no stone unturned, but he's not practicing right now. I'm seeing another Dr who also seems thorough, and caring, so im praying about my follow-up.
I know you said your scared...but let's take it one day at a time. You could remain stable for years, so why not let tomorrow worry about itself...enjoy today. Treatment these days, seems very positive too.

Jump to this post

Thank you for sharing with me. I talk to God a lot. Scared. I have to be positive. Stop driving myself crazy.

REPLY
canadabob | @canadabob | Nov 26, 2023
In reply to @dazlin "@canadabob , sorry to hear this...I dont understand why your not under the care of a..." + (show)
@dazlin

@canadabob , sorry to hear this...I dont understand why your not under the care of a hematologist??
The swelling could be connected to different types of conditions...there are also different types of mgus. I have IGG KAPPA.

Jump to this post

The MGUS was discovered by a neurologist 4 years ago who has been monitoring it every 6 months. I asked him for a referral to a hematologist and his answer was that “all they would do is take bone marrow biopsy”. I have no idea why he has this attitude. He’s not the expert on MGUS. Not by a long shot.

I have since convinced my family doctor to refer me and now I’m just waiting for the call.

REPLY
1 reply
dazlin | @dazlin | Nov 26, 2023
In reply to @canadabob "The MGUS was discovered by a neurologist 4 years ago who has been monitoring it every..." + (show)
@canadabob

The MGUS was discovered by a neurologist 4 years ago who has been monitoring it every 6 months. I asked him for a referral to a hematologist and his answer was that “all they would do is take bone marrow biopsy”. I have no idea why he has this attitude. He’s not the expert on MGUS. Not by a long shot.

I have since convinced my family doctor to refer me and now I’m just waiting for the call.

Jump to this post

@canadabob , GREAT!!! My primary has said he can handle me too....yet he never found the mgus.
Mayo does an extensive bloodwork which they call a bundle test. I'm so grateful to be a patient there/have them as my drs...they are like guardian angels to me. Hope you get seen soon, my best to you!!

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