MGUS

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

Liked by maryy, janemichele

@hopeful33250

Hello @stuckonu,

I am sorry to read that you are going through a difficult time right now. I am glad that you posted an update. As I looked at your posts I see there was a time when you posted a lot in the Gratitude discussion group. Maybe you could look back over those posts and see if they could encourage you right now.

Here is the link to that discussion, https://connect.mayoclinic.org/discussion/gratitude-discussion-group/.

Will you consider posting one thing you are grateful for today?

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So Teresa, I hired a health care profession who is very positive and send morning greetings everyday. How can one not be grateful for her presence? I even tell her often, maybe everyday! On the same theme, she had a near fatal event so I do things with and for her. I’m very grateful that I put my complaint bag aside and it makes me feel good to do it. I never forget that bag that I leave behind and I’ve already heard from many to “ fa’getta bout it “ maybe if I believed in wishes or hope I might get dementia so I can just put it away.
I’ve become very negative about the whole medical field in general and as much as people like “ sharing “ their concerns and maladies they don’t like hearing a trashing of the system that they surrender to.
So, for instance I carried the 7 page report about the biopsies done in 2017 where “ MGUS “ was mentioned on half of the pages. My VA doctor ordered follow up testing and everything came back “ negative “ Good right? But as I saw it I wanted to know why the hospital that did the biopsies never discussed, showed concern, ordered more definitive testing as: the nodules were discovered in a cervical MRI the lead to the biopsies with no mention of Hyperparathyroidism and their GOOD NEWS was NO CANCER! Also no plans going forward. I have no voice and when I told the same doctor the no one seems interested or concerned about my voice he replied: “ I resent that! “ 1 hour with him. He listen to my heart from my back. No blood work or urine test when the last test had: blood and calcium in urine, extremely low vitamin D and two other chemical in my blood suggesting Hyperparathyroidism. I’ve been taking 50,000 units of D2, every 4 days 2000 Units of D3 liquid several times a day in coffee and juice fortified with D and Calcium, but perhaps his “ RESENTMENT “ effected his behavior.
One week later my concierge doctor did the D test and reported that it’s on the low side of normal.
I wonder what DXs come and go?
One last curiosity: I did a search for most missed diagnosed illness are since two best friends suddenly passed away from misdiagnosed ALS. Pretty scary to me

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

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@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

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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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@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!!

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@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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@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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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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@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

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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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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@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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