MGUS: Please, let me know I not alone
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
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
@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
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!
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
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??
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.
I have just been diagnosed with MGUS at 73.
I ask my Hematologist about B12. She ran my levels and mine was 322. The range is 211 to 911. Since mine was on the low side of within range. She told me to take Sublingual B-12 to help raise my B-12 level.
It is my understanding it could take several weeks before noticing, if any, help from the B-12
I thought you might be interested, I have run a red cell count of 3.75-4.00 most of my life (I am now 92). I have been diagnosed with MGUS this past year (because I developed Trigeminal Neuralgia) and was sent for some additional lab tests. I have had two additional testings, and they tell me if my next one is normal or about the same I only need to be seen once a year. Prior to this new diagnosis there was never a mention of Multiple Myeloma. Hope this may give you some peace of mind. I think you have a very long life ahead of you. Start enjoying the precious moments, and let the years take care of themselves.
Hey y’all. @gina5009 brought this to our attention in another thread. Seems like a pretty significant finding. It’s always good to have some positive news. As the amazing Ted Lasso says (If you don’t watch Ted you’re missing a solid show)
"You say impossible, but all I hear is 'I'm possible.'"
Thanks! The 90% remission rate was what caught my eye. Always hoping someone will unlock the cure for this and all cancers.
I'm with you I was diagnosed with MGUS a year ago and have been extremely sick. I have gotten no where with treatment we're I'm at and would love to visit the Mayo Clinic!!!!