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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Ginger, Volunteer Mentor | @gingerw | Dec 17, 2022

In reply to @lynne756 "Hi, I am new here. 55 years old and dx with MGUS this past summer after..." + (show)

@lynne756 Welcome to Mayo Clinic Connect, Lynne! When we get a diagnosis that is confusing, it sure can set us back on our heels, can't it? MGUS is one of those conditions we might hear, but not really understand. Often, it comes along while being tested for something else, just like you experienced. I think that most of us here have had that happen to us.

As you read the posts, you'll see that we go through the wait-and-watch monitoring, usually bloodwork every three to six months. For me, I was going every three months back in 2017, and then my doctor decided to go every six months. Unfortunately, that first time was when things took a nose dive and she really regretted her decision to go six months. Many [dare I say most?] people go for many years never progressing beyond the MGUS stage, while others of us move into SMM [smoldering multiple myeloma].

I'm glad to hear your anemia and iron is now stable. Eating healthy, reducing your stress levels as much as possible, getting moderate exercise, and living life to your fullest is important! Being mindful of this condition, but not focusing on it, helped me. Being an overachiever, plus having additional health issues, I moved quickly from MGUS into SMM and then into active multiple myeloma, but my story is not the normal one.

Oh, the trisomy of 11 and 14 you were wondering about is having 3 copies of those chromosomes sometimes, instead of 2 in a cell.

We're here for you! Do you have any questions for me today?
Ginger

tallyteresa | @tallyteresa | Dec 17, 2022

In reply to @lynne756 "Hi, I am new here. 55 years old and dx with MGUS this past summer after..." + (show)

It gets easier as time passes to deal with the diagnosis, to understand the plusses in knowing. We live longer being actively monitored.
Any other cancers are caught earlier as well as myeloma if we ever progress to that point which is a huge positive. Early treatment helps!!

lynne756 | @lynne756 | Dec 16, 2022

In reply to @mommatracy5 "Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find..." + (show)

Hi, I am new here. 55 years old and dx with MGUS this past summer after a year of feeling unwell, specifically bone/joint pain and fatigue. During that year, I was probably also terribly anemic and unfortunately this was not found until this past summer --- when an M spike was found by a rheumatologist whom my PCP sent me to for my fatigue and body pain --- who then sent me to see my old hematologist/oncologist (I had thryoid cancer in 2007) who found that my ferritin was 7. Why a PCP doesn't run ferritin labs is beyond me! A year of my life...going to my PCP often, saying "I don't feel right. I'm really tired. I wake up hurting and it takes my body 1 hour if not more to limber up." I had two ferritin infusions a week apart and my anemia and ferritin are now good. Time will tell how long it lasts. I also had a lot of labs...FISH, bone marrow biopsy; just to name a few. Anyway, I don't understand it all. I will be checked every 3 months. I have a "trisomy of 11 and 14" (whatever that means), kappa with IgG....sorry, I found this page and don't have my labs in front of me. But I have a lot of labs and I really don't understand them. My hematologist /oncologist told me I have MGUS and not to worry --- every 3 months we'll look at my labs. Any advice? Thanks, and all the best to all of you!

nolarn | @nolarn | Nov 25, 2022

As an old oncology nurse (in age and experience) I think one of the most amazing changes I have witnessed is collaboration between institutions and doctors. We each need to recognize there in more than one way to skin this cat and keep at it. Sometimes that means challenging your doctor and being courageous enough to stop being a “doctor pleaser.” My own husband is reluctant to “complain” to his doctor when he should feel comfortable telling it like it is. It is great that Dr G trained at Mayo because they are more likely to collaborate with colleagues they know and respect.

Ginger, Volunteer Mentor | @gingerw | Nov 25, 2022

In reply to @nolarn "Ginger, you seem grounded and very knowledgeable about MGUS. I live near Boston and Dana Farber..." + (show)

@nolarn Thank you for the compliment. I'm all for research that will help point the way to slowing down/heading off advancing illnesses of any kind! So many times it takes stepping out of the box of what may be deemed conventional medicine and bravely looking at things in a new light, from a new viewpoint.

While research seems to point to the idea that there is no clearcut cause of MGUS, it is my belief [your mileage may vary!] that some people have a proclivity to certain maladies, or malady families as it were. For me, it is several different autoimmune conditions, as if my body is entertaining its own little civil war.

Would I have loved to be part of such a study for MGUS? You bet! As an active multiple myeloma patient, if I could assist in any way, I would be happy to. Did you notice that Dr. Irene Ghobiani trained at Mayo Clinic in Rochester, MN? Nothing ventured, nothing gained, in the field of blood cancer patients, and helping everyone to live their best lives possible!
Ginger

nolarn | @nolarn | Nov 25, 2022

In reply to @gingerw "@tammy11 Welcome to Mayo Clinic Connect! Have you been diagnosed with MGUS? Any questions you have..." + (show)

Ginger, you seem grounded and very knowledgeable about MGUS. I live near Boston and Dana Farber and have been looking their PROMISE clinic and research. Their goal is to find the MM precursors so that people with MGUS don’t progress to more advanced illnesses. Some of their research (I think) points to more aggressive treatments rather than watchful waiting. Your thoughts? Many thanks!

Ginger, Volunteer Mentor | @gingerw | Aug 26, 2022

In reply to @tammym11 "Thank you" + (show)

@tammy11 Welcome to Mayo Clinic Connect! Have you been diagnosed with MGUS? Any questions you have for me?
Ginger

tammym11 | @tammym11 | Aug 26, 2022

In reply to @gingerw "@crazbound Welcome to Mayo Clinic Connect! So many of us can definitely relate to having a..." + (show)

Thank you

sgtrn | @sgtrn | Aug 20, 2022

In reply to @crsazbound "Hi I was just diagnosed I have so many ? My doctor order much more lab..." + (show)

I was diagnosed with MGUS over 14 years ago, DURING routine preop physical. Lab values are quite elevated but really do not have any bad symptoms. My Hemoglobin stays low at 7-8.2 range so take a nap most afternoons. My immunoglobulins are compromised but I am rarely sick. I will not take the CoVid vaccine because of more risk with MGUS but all in all I mostly forget I have it. Hope your course goes as smoothly.

Ginger, Volunteer Mentor | @gingerw | Aug 19, 2022

In reply to @becky1024 "I understand what you’re saying Ginger but this is a teaching hospital for medical professionals, doctors,..." + (show)

@becky1024

I understand what you’re saying Ginger but this is a teaching hospital for medical professionals, doctors, nurses, you name a specialist and they’re probably teaching it in one of their hospitals. They control a lot of technology and in my lifetime, I’ve had at least 50 to 100 doctors if not more, with about 3 or 4 million dollars in bills

I started out defective with 5 genetic defects so far. Back in 2006, my nonexistent immune system challenged the whole medical profession. How you say? I took my then 8yo grandson to the Mouse House, you know the one, where millions of unvaccinated people from around the world come here to go to the Mouse House. Just before we came home, I got real sick. As soon as we got home I was at the ER who then called the best ENT around here. Test after test after test after test were done. Drug after drug after drug was tried to kill the bug(sound familiar).but nothing worked. Week after week runs into a month after month. All they knew, is it’s a Super Drug Resistant Bug, nothing will kill it. Things are getting real bad for me as my doctors contact the CDC, yeh that CDC. They don’t know what drug to try either except the TDOLR. It’s call “The drug of last resort!” It kills 99.99%of EVERY bug in your body, good, bad or indifferent. Lets just say the drug was worst than the disease. That bug was smart tho, it found the only little hiding spot in a human being, where the drug couldn’t reach.

Do I still have the bug, yep but it starved to death. The hiding spot, the very deepest part of the inner ear. I’m partially deaf in that left ear yet, 16 years later. As the saying goes, “The dogs bark is worse than the bite.” To think everyone is worried about a few months time. This body is a disaster to the medical profession. Do you realize how many medical things are wrong with me and I have a doctor to prove it, specialist in fields I never knew existed including multiple mental health professionals including psychiatrist, psychologist and therapist. Why, because my paternal grandfather passed along a genetic defect that causes mental problems.

Thanks to everyone who’s so concerned about me. Time will tell if I’m worth saving because my one cardiologist told me my heart’s so bad, I could drop dead between the first half of a heartbeat and the second half. It happened just like that to my one 1st cousin. He had one foot on his porch and one inside the house and dropped dead, the autopsy said he was dead before he hit the floor. You all are kind wonderful people but you’re worrying over nothing. Just think of my life and the end of it, will it be the next one, the one after that one the one after that? Get the point? I could be dead before I even post this and y’all be worrying about November!!! Luv ya.

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@becky1024 Well, the facility I was at during the time I referred to, was a large teaching hospital, too. My primary care doctor became the medical director, and one of my specialists was "the man" overseeing all the residents. My approach worked for me, and I bet it might work for you, also, if you don't want to wait until November.
Ginger

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