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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Profile picture for dazlin @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.

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

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Profile picture for canadabob @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.

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@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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Profile picture for tatajess @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.

REPLY

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

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Profile picture for dazlin @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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Oh. Yes. Ok. I read your comment. How long have you had mgus. That you know of

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Profile picture for tatajess @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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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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Profile picture for dazlin @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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Profile picture for tatajess @tatajess

Not in my joints. Goes down my leg. Top and bottom of both legs. Hard to sleep. Always in pain. It started some months ago. Went away. Now it's back and won't leave

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@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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Profile picture for Lori, Volunteer Mentor @loribmt

Fifty two is young to develop arthritis in both legs. Is there a possibility of getting a second opinion for your legs? Is the pain in your leg joints?

Here are a couple of articles about arthritis, the different types, how to diagnos and some treatments including meds, PT, alternative medicine such as acupuncture, yoga, etc., to help ease the discomfort.
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https://www.mayoclinic.org/diseases-conditions/arthritis/diagnosis-treatment/drc-20350777
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https://www.aarp.org/health/conditions-treatments/info-2020/arthritis-symptoms.html
Arthritis is caused by inflammation. One way to help control flareups and further inflammation is to eat a healthy diet of anti-inflammatory foods. This is a link to just one of many articles online for curbing inflammation through diet.
https://www.verywellhealth.com/anti-inflammatory-diet-may-help-arthritis-189628
Your doctors ruled out MM which is great. But when you were told it was arthritis, were there any tests run to confirm this?

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Not in my joints. Goes down my leg. Top and bottom of both legs. Hard to sleep. Always in pain. It started some months ago. Went away. Now it's back and won't leave

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