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

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

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

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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)
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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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@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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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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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)
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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dazlin | @dazlin | Nov 26, 2023
In reply to @tatajess "Not in my joints. Goes down my leg. Top and bottom of both legs. Hard to..." + (show)
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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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@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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tatajess | @tatajess | Nov 26, 2023
In reply to @loribmt "Fifty two is young to develop arthritis in both legs. Is there a possibility of getting..." + (show)
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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.
~~
https://www.mayoclinic.org/diseases-conditions/arthritis/diagnosis-treatment/drc-20350777
~~
https://www.aarp.org/health/conditions-treatments/info-2020/arthritis-symptoms.html?cmp=KNC-DSO-COR-Health-Arthritis-NonBrand-Phrase-29834-Bing-HEALTH-ConditionsTreatments-ConditionsTreatments-ArthritisSymptoms-Phrase-NonBrand&&msclkid=cb307bc22214148165511ea06e08d98f&utm_source=bing&utm_medium=cpc&utm_campaign=Health-Arthritis-NonBrand-Phrase&utm_term=how%20do%20you%20know%20if%20you%20have%20arthritis&utm_content=ConditionsTreatments-ArthritisSymptoms&gclid=cb307bc22214148165511ea06e08d98f&gclsrc=3p.ds
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?utm_campaign=686804331-1185274561803340&utm_source=bingpaid&utm_medium=paid&utm_content=74079885875429&utm_term=o-arthritis%20and%20diet-anti-inflammatory%20foods%20for%20arthritis&msclkid=989d0e8c7dec148228a76bee3673877e
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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tatajess | @tatajess | Nov 26, 2023
In reply to @pmm "@tatajess Greetings from Arkansas. I am glad to hear that your MRI results were “unremarkable” as..." + (show)
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@tatajess
Greetings from Arkansas. I am glad to hear that your MRI results were “unremarkable” as they seem inclined to say.
It’s a lot to process, all the dots and likely causes and confusing information sometimes as they say they may, or may not be connected.
It was a relief to me that what they thought might be a lesion on my C2 vertebrae was attributable to arthritis upon further evaluation. Three years out from diagnosis and my MGUS just seems to be lurking. Sneaky ingrate that it is. One would think as it’s host, I would be afforded a bit more consideration.
I have neuropathy in my feet and associated bone pain. Where is your bone pain? I suppose my age is also a consideration as I will turn 72 in May.
I’m glad you don’t have bone lesions, but nag your doctor to get to the source of your bone pain. I hope you have found someone who has extensive experience treating Multiple myeloma. MGUS is not cancer, but you want to be sure that your physician is well trained, experienced, not dismissive of your questions and concerns and takes your MGUS seriously.
Let us know how you are and what you find out. Great people here who are quite helpful.
Patty

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Yes. This is the same leg pain I had when I had covid. This is what prompted me to go to the Dr. Also. Lower back pain. My mother said to go see about myeloma, because her pain, started in her lower back. The 1st visit to er the Dr agreed with me, with restless leg syndrome. But the pain won't go away. So. I went back to the myeloma drs. Did more blood works. Have osteopenia. So. Was put on vitamin d and calcium. I'm going to seek out more help. Don't want to miss something. This bone pain in my legs won't go away

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tatajess | @tatajess | Nov 26, 2023
In reply to @loribmt "Fifty two is young to develop arthritis in both legs. Is there a possibility of getting..." + (show)
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.
~~
https://www.mayoclinic.org/diseases-conditions/arthritis/diagnosis-treatment/drc-20350777
~~
https://www.aarp.org/health/conditions-treatments/info-2020/arthritis-symptoms.html?cmp=KNC-DSO-COR-Health-Arthritis-NonBrand-Phrase-29834-Bing-HEALTH-ConditionsTreatments-ConditionsTreatments-ArthritisSymptoms-Phrase-NonBrand&&msclkid=cb307bc22214148165511ea06e08d98f&utm_source=bing&utm_medium=cpc&utm_campaign=Health-Arthritis-NonBrand-Phrase&utm_term=how%20do%20you%20know%20if%20you%20have%20arthritis&utm_content=ConditionsTreatments-ArthritisSymptoms&gclid=cb307bc22214148165511ea06e08d98f&gclsrc=3p.ds
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?utm_campaign=686804331-1185274561803340&utm_source=bingpaid&utm_medium=paid&utm_content=74079885875429&utm_term=o-arthritis%20and%20diet-anti-inflammatory%20foods%20for%20arthritis&msclkid=989d0e8c7dec148228a76bee3673877e
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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I did a bone density. Also. My my mother has mm. That's the scary part

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