1. < Blood Cancers & Disorders

MGUS: Please, let me know I not alone

Posted by bonnie canby @bonniecanby, May 21, 2012

i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc's and a lot of pain. please let me know that I am not alone. bonne

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sstillwell | @sstillwell | Jan 19, 2022

I read several studies on BCMA levels and MGUS progression. sBCMA levels were noticed to increase as MGUS / smoldering progress to Myeloma or related. Then I read studies to see if there was a way to decrease BCMA levels with diet. I did not find a study on this but did find elevated BCMA levels are correlated to increased cytokines. Omega 3 increased in our diets does have studies showing it can help decrease cytokine levels. I found this interesting and wanted to share in case anyone likes to research diet/health (my passion) and get their MDs opinion 😉

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1 reply
alexia | @alexia | Jan 17, 2022
In reply to @colleenyoung "@cctoo, it would be interesting to ask your doctor about the possible relationship between Monoclonal gammopathy..." + (show)
@colleenyoung

@cctoo, it would be interesting to ask your doctor about the possible relationship between Monoclonal gammopathy of undetermined significance (MGUS) and thyroid issues. People with MGUS are known to be at an increased risk of bone fractures. You'll want to careful to lower your risk for falls. I'm glad to hear you don't have any bone pain. Have you had a bone density test?

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Just saw this post. I wonder if there’s a gene that links lMGUS with Hashimotos’s (autoimmune hypothyroidism and hyperlarathyroid. I was diagnosed with the first two within months of each other and one or 2 years prior to that hyperparathyroidism, or maybe one causes another.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 1, 2020
In reply to @auntieoakley "Hello Carleen, The last time I was at a multiple Myeloma conference was a few years..." + (show)
@auntieoakley

Hello Carleen, The last time I was at a multiple Myeloma conference was a few years back but at that time, there was no really great understanding of why some people got full blown myeloma, and some people never did. That being said at that time many people finished their long lives without ever getting it. The other tidbit of information I can give, and it really is a tiny bit, is that my husband developed an under active thyroid after 8 years with myeloma and many treatments down the road. This is well controlled with a daily medication. We are 10 and half years into the journey with multiple myeloma, he was diagnosed with advanced myeloma with bone disease, he is doing well. I remember being in my oncologists office 16 years ago and Mike Katz was on the cover of a cancer magazine because 10 years with myeloma was nothing short of a miracle, now it is a lot more common. If you have MGUS, live your life watch the numbers when you should, be kind to your bones and your kidneys, and try not to spend your time worrying.

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@auntioakley This is fascinating, reading about MGUS and thyroid. Thank you for sharing what you and your husband have experienced. I still maintain the body is such a miraculous machine. There is so much we are finding out every year about how all the systems interact with each other!
Ginger

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Nov 1, 2020
In reply to @cctoo "I have thyroid nodules..more every year...was told Hashimotos disease..no treatment...also take d2...no idea why! Wonder now..." + (show)
@cctoo

I have thyroid nodules..more every year...was told Hashimotos disease..no treatment...also take d2...no idea why! Wonder now if any of this relates to mgus. D2 for osteoporosis I guess but no falls, fractures or pain!! Thank God!!

Jump to this post

Hello Carleen, The last time I was at a multiple Myeloma conference was a few years back but at that time, there was no really great understanding of why some people got full blown myeloma, and some people never did. That being said at that time many people finished their long lives without ever getting it. The other tidbit of information I can give, and it really is a tiny bit, is that my husband developed an under active thyroid after 8 years with myeloma and many treatments down the road. This is well controlled with a daily medication. We are 10 and half years into the journey with multiple myeloma, he was diagnosed with advanced myeloma with bone disease, he is doing well. I remember being in my oncologists office 16 years ago and Mike Katz was on the cover of a cancer magazine because 10 years with myeloma was nothing short of a miracle, now it is a lot more common. If you have MGUS, live your life watch the numbers when you should, be kind to your bones and your kidneys, and try not to spend your time worrying.

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1 reply
cctoo. Catherine Crowley | @cctoo | Oct 31, 2020
In reply to @cctoo "Yes I have had two reds scans and both mentioned bad osteoporosis! But so far no..." + (show)
@cctoo

Yes I have had two reds scans and both mentioned bad osteoporosis! But so far no pain or bones broken! I am 84!

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Coleen, my tablet changes words!! It is Dexa!! My name is Carleen and often called Colleen.

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cctoo. Catherine Crowley | @cctoo | Oct 31, 2020
In reply to @colleenyoung "@cctoo, it would be interesting to ask your doctor about the possible relationship between Monoclonal gammopathy..." + (show)
@colleenyoung

@cctoo, it would be interesting to ask your doctor about the possible relationship between Monoclonal gammopathy of undetermined significance (MGUS) and thyroid issues. People with MGUS are known to be at an increased risk of bone fractures. You'll want to careful to lower your risk for falls. I'm glad to hear you don't have any bone pain. Have you had a bone density test?

Jump to this post

Yes I have had two reds scans and both mentioned bad osteoporosis! But so far no pain or bones broken! I am 84!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31, 2020
In reply to @cctoo "I have thyroid nodules..more every year...was told Hashimotos disease..no treatment...also take d2...no idea why! Wonder now..." + (show)
@cctoo

I have thyroid nodules..more every year...was told Hashimotos disease..no treatment...also take d2...no idea why! Wonder now if any of this relates to mgus. D2 for osteoporosis I guess but no falls, fractures or pain!! Thank God!!

Jump to this post

@cctoo, it would be interesting to ask your doctor about the possible relationship between Monoclonal gammopathy of undetermined significance (MGUS) and thyroid issues. People with MGUS are known to be at an increased risk of bone fractures. You'll want to careful to lower your risk for falls. I'm glad to hear you don't have any bone pain. Have you had a bone density test?

REPLY
2 replies
cctoo. Catherine Crowley | @cctoo | Oct 23, 2020
In reply to @stuckonu "Besides these ? ( I actually do not know how to refer to any of the..." + (show)
@stuckonu

Besides these ? ( I actually do not know how to refer to any of the things that are being discovered “ accidentally “ if I can use that term. A cervical MRI revealed “ lumps “ on my thyroid, cat scan of thyroid lead to biopsy, which resulted in this chapter about MGUS. No one mentioned it before or after the biopsy. And MGUS articles suggest that MGUS is more likely to be discovered while doing tests for other things.
I apologize if I’m repeating myself. That said it sure seems that everything of late is discovered “ by accident “ as I like to say. But one thing that makes everything more troubling is that no one seems to jump in and take control.

My tendency to turn people off with my long letters doesn’t help me get proper info. If I could learn some rules or tricks to say only what needs to be said maybe I can learn how to summarize things. But I admit that a racing mind is difficult to train.

I thought that I posted one of those extra long letters lamenting how I got to this place.

Today I’m on my way to Duke Radiology for a 4D cat scan.

Examples of why my letters get so long might be a byproduct of details and consequences compounded by delays in processing.

If I simply listed symptoms that I’m dealing with maybe that can help. Any thoughts on that idea?

SOU

Jump to this post

I have thyroid nodules..more every year...was told Hashimotos disease..no treatment...also take d2...no idea why! Wonder now if any of this relates to mgus. D2 for osteoporosis I guess but no falls, fractures or pain!! Thank God!!

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2 replies
cctoo. Catherine Crowley | @cctoo | Oct 23, 2020

With covid19 now so rampant, I stay away from Drs.! That is big worry now for us!!!

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cctoo. Catherine Crowley | @cctoo | Oct 23, 2020
In reply to @billh "MGUS has a long name and what it means is that there is an extra M..." + (show)
@billh

MGUS has a long name and what it means is that there is an extra M protein in your blood. I was diagnosed with this about 5 years ago and my blood is checked every 6 months to make sure that the protein level is stable. I have no special diet or any treatment. I see a hematologist/oncologist for monitoring. If the protein level changes, then further testing is needed. Yes it is kind of like a time bomb, but I have my faith and that allows me to keep going.

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Sounds like me! No pain...kind of forgot I was diagnosed with mgus!! Have other health issues but compared to all my friends who do not have mgus, I am doing the best of all of us!! I just attribute some issues to older age!!! Go in Every six months. for blood work. No tests on bone marrow etc. Mainly I get tired day after I have done anything g extra! Used to have numbness in legs but that disappeared .

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