Does anyone else have MGUS?

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

@gingerw,
Can I ask you how long you had MGUS before it progressed to MM? Did you ever have any symptoms with MGUS at any time? Thanks for your encouragement and help. And I will keep you in my prayers during your chemotherapy.

@1oldsoul I had a first dose of Evusheld in February. In two weeks I will get a booster. No reaction the first time around! Be prepared to sit for an hour after they give you the shot, that is the protocol, to watch for any reactions.

In Jan and Feb 2021 I had doses of Pfizer vaccine, then 3rd shot of that in August, plus 4th dose in March this year. No reaction to any of them.

I had MGUS IgM kappa, that progressed to multiple myeloma in 2019, before Covid. At this time I am actively on chemotherapy. Please let me know if I can answer any questions for you. A new diagnosis can be scary, and having a support team is a comfort. My biggest piece of advice is please do not do the "Dr. Google" thing! It can send you down a rabbit hole and dump you out who-knows-where, filling you with worst case scenarios! The biggest majority of people never progress beyond MGUS.
Ginger

Hi Ginger and thank you for the reply. My hematologist is aware that I have not had a Covid vaccine and he stated they would not work for me anyway. I was too reluctant to take the regular Covid vaccine after seeing all the terrible side affects on VAAERS. He recommended the Evusheld vaccine at my appointment with him yesterday. Just wanted to find out if you had any reaction at all from it. I have never had a reaction to flu or pneumonia vaccines. I am looking forward to reading the discussions here as this diagnosis is pretty recent for me. Right now I am being monitored every 3 months as my IGA and IGG have continued to fall and my IGM continues to rise although he is not too concerned “yet”

@1oldsoul Welcome to Mayo Clinic Connect!

A few questions come to mind as I read your post. Have you experienced reactions to vaccines or their components in the past? Is your hematologist aware you have not had any Covid-19 vaccines, yet? What prompted him/her to recommend Evusheld for you?

Evusheld is a pre-exposure prophylaxis for people who may be immunocompromised or have medical conditions that put them at high risk. Here is some additional information from their website: https://www.evusheld.com/en/patient

Within our transplant group, there is a discussion about Evusheld, also, that you might want to read: https://connect.mayoclinic.org/discussion/evusheld/

I'd like to know your thoughts on this!
Ginger

Dear MGUS Newbie,
Welcome! I’ve had MGUS since age 75. I’m now 82, hypertensive, have metabolic syndrome obesity, use an APap for sleep apnea, have NAFLD (non-alcoholic fatty liver disease) Hashimoto’s hypothyroidism and probably other things I don’t even know about. Deciding to take covid vaccines was easy for me. Considering my risks, I need to protect myself in the best ways possible!

Since I watch ethical major news networks (and absolutely never watch Fox or OAN,) I don’t do social networking at all, so certainly would never rely on them for factual information. I keep informed by experts interviewed on factual news channels. The experts, namely physicians and epidemiologists, have said this is an “epidemic of the unvaccinated.” They said that before omicron and its variants. I tend to believe their helpful commentary.

We can learn from them.

A variety of covid vaccines are being used around the world. If they weren’t saving lives they would not be so popular. I chose to use Moderna and had both first two innoculations, as prescribed, (Very slight side effects. I thought I felt lethargic but might have been imagining that.) Also had both half-dose boosters. Even though I had the post-omicron dosage amounts of Evusheld, (with absolutely no side effects) I will plan to get the bi-valent (two covid virus strains) of Moderna shots when they come out. And, like every year, I will get my flu shot, seeking a pharmacy which carries Sanofi quadrivalent fluzone, being certain to get the senior, larger dose amount. It is many years since I’ve had the flu, so I believe those flu shots helped. My question will be which month to get it this year, so I’ll email my wonderful PCP to ask the timing he advises.

It is difficult to understand vaccine hesitancy. An in-law cousin’s brother was born with autism and she blames innoculations. Recent knowledge has come from doing imaging on 6 month old baby brains. Autism differences were noted even then, at that early time before they get any shots.

Innoculations are tools which help keep us well. I plan to always stay up to date with mine.

Suggest you look within and ask yourself why you are hesitant. Then ask whether your current belief is helpful to you. Here’s a quote from my grandmother; “I keep my mind clean by changing it often.”

Suggest get courageous and face the needle. Well, not quite. It will be your other end which receives a pair of needles! Wishing you all the best!