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

Hi. I was diagnosed in January. Very scary. My mother has mm. They say it's not hereditary. I'm in pain. Bone pain. Just did an mri. Waiting on results. They don't look good. I'm. Hoping it hasn't progressed to mm. Anyone else on here. Have pain

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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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@1deb12

Hello, Yes I have MGUS.

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Welcome to Connect, @1deb12. Would you like to share a little bit more about yourself? When were you diagnosed with MGUS? Were you having symptoms that led to your diagnosis or was this discovered with routine blood work? Do you have any questions for other members who have MGUS?

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@loribmt

That’s wonderful news about the MRI results, tatajess! Now you can exhale. ☺️
Are you still having the bone pain though? Will your doctor be following up with those symptoms?

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Yes. Still have the bone pain, in my legs. They said it's arthritis. I'm 52

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@tatajess

Yes. Still have the bone pain, in my legs. They said it's arthritis. I'm 52

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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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@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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@pmm

@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

REPLY
@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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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

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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@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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