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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Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 13 10:16am
In reply to @gmichelle "I have had MGUS for 3 years. I have developed low Iron and anemia. Is this..." + (show)
@gmichelle

I have had MGUS for 3 years. I have developed low Iron and anemia. Is this common with MGUS? My Dr. told me no more COVID shots because my Iron bottomed out after receiving several booster shots. Want to know if this is just a fluke or does MGUS over a period of time contribute to low iron and anemia.

Jump to this post

@gmichelle There is no clearcut evidence that it is always linked, but some people do experience low iron and anemia with MGUS. In my own experience, there are contributing factors with other health issues, and altogether, it created anemia. That said, it is my opinion only, that the whole person must be taken into account, not just one single thing. I advanced from MGUS to Smoldering Myeloma to Multiple Myeloma in short order, which was truly unusual. Coupled with end-stage kidney disease and, well, it was a perfect storm of things happening. My kidney disease is not related to MGUS or myeloma, but rather an ultra-rare autoimmune condition.

Here is what John Hopkins has to say about MGUS and anemia: https://www.hopkinsmedicine.org/health/conditions-and-diseases/monoclonal-gammopathies
Ginger

REPLY
raye | @raye | Jan 13 12:18pm

Going to Mayo Clinic is an excellent idea! Due to MGUS I flew from Los Angeles to Rochester, MN to get thoroughly checked out on all sorts of concerns. Be sure to use their travel agent, $25 extra charge, in case you need to stay longer. Mayo has an agreement with Delta to prevent charging for flight changes in case you need to stay longer. I did not need travel insurance five years ago.

Relax, take a deep breath and do it. Go to Mayo! I’m glad I did!

REPLY
brix | @brix | Jan 14 7:59am
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.

Jump to this post

I was diagnosed with MGUS 3 years ago after more than a year of low grade anemia. I see a hematologist oncologist as well. I had a bone marrow biopsy to confirm the diagnosis but have no treatment or special diet. My bloodI was originally tested every six months but since my protein level has been stable since diagnosis I now am tested once a year and I see the doctor to discuss the results. Frankly I sometimes forget I have MGUS. If it turns into multiple myeloma I will get treated but I don’t worry about it since there is nothing I can do Your post was helpful since many of the other posts seemed to be having a lot of concerns regarding the diagnosis. Your journey with MGUS is very similar to mine. Thanks

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jackir | @jackir | Jan 14 12:56pm
In reply to @gmichelle "I have had MGUS for 3 years. I have developed low Iron and anemia. Is this..." + (show)
@gmichelle

I have had MGUS for 3 years. I have developed low Iron and anemia. Is this common with MGUS? My Dr. told me no more COVID shots because my Iron bottomed out after receiving several booster shots. Want to know if this is just a fluke or does MGUS over a period of time contribute to low iron and anemia.

Jump to this post

I had low iron in 10s for 15 years, oral iron always brought it back up. PCP didn’t want me to take iron all the time. After covid vaccination it did not go back up with 5 iron infusions. PCP suggested hematologist and I was diagnosed with Waldenstrom’s Macroglobulemia. Did vaccination turn lymphoma on??

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eulo | @eulo | Mar 8 3:24pm

Hello everyone,
I have found these scientific works published in 2021, on effects caused on the skin by MGUS.
Has anyone studied them?
Do you know of other similar jobs?
Thank you so much.
https://www.scielo.cl/scielo.php?script=sci_arttext&pid=S0034-98872021000500747

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