Does anyone else have MGUS?

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!

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

Thank you

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.

@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

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.

@becky1024 Like you, in the past I have had doctors who had several roles to play beyond being on my medical team. One thing that worked for me is to talk frankly to them, and explain respectfully, and from my point of view, how it was affecting my case to not have them available. Then I asked for a recommendation to someone they have trust and faith in, who could see me, and refer back to the doctor if there were concerns or questions. In all the times I did that, it worked out great! More than one doctor told me he wanted to keep me in his patient queue because my situation was unique, others agreed they were not able to give me the time my case required and had someone step in for them. It wasn't that they were giving up on me, just realizing they were spreading themselves too thin.

Perhaps this approach might work for you. You'll never know, shared wisdom may bring about better results.
Ginger

You are worth their time. I retired six months ago from my work as a medical social worker for a Children’s Hospital. I have arranged for doctors to meet to discuss patient care many, many times. They are busy guys and gals. It is their job, however, to provide the best care possible for their patients in a timely manner. If there is a social worker attached to your treatment facility do contact him or her.
We want to be good patients but sometimes being a good patient means being a squeaky wheel. I am always respectful but firm and persistent when I am advocating for myself or for someone else.

@1oldsoul Well, officially I was diagnosed with MGUS 2018, but all signs point to issues for a couple of years before that. I was in an HMO medical group that chose to ignore some trends in my bloodwork. It was when I changed kidney doctors to someone out of network that everything got rolling.

And, please understand that the vast majority of people do not progress beyond MGUS. As my medical team and I say, "I am an overachiever!"
Ginger

Sounds simple but complicated. My Electrophysiologist (Heart Rhythm Doctor) is so busy, he had to see me during his lunch break. He’s the boss of 35 other doctors , so he has no time for a conference call. My .PCP is so busy teaching other doctors, in the beginning of July I scheduled my next appointment. I set it up and guess when it is, January 6th, 2023. That’s just two of my Doctors, my Oncologist/.Hematologist is also the top boss in the Oncology Department. My Neurologist is in a different hospital altogether. Sounds simple but complicated huh. November will be here before they could all find the time.

Plus I think my Oncologist is bringing in another doctor for consolation and may also bring a Geneticist to the team. Thanks for caring. Becky