Does anyone else have MGUS?

I hope that funeral pre-payment is not necessary to utilize for a very long time. With inflation, it’s a safe bet for all of us though.
Since I was diagnosed, I have met so many people who are MGUS patients. Each has a unique story. There is so much to consider though with co morbidities, age, general overall health, etc. I rely on my hem/onc doc to keep track of all of that and to adopt a treatment plan that will produce the best possible outcome. While I ask lots of questions, I find that I feel better when I shed the anxiety and live my life fully each day. I don’t compare my numbers favorably or otherwise with those of others because there are too many variables.
That’s just what works for me.
Y’all have a great week. We have had MiMi and Papa duty for the past few days. If a two and four year old don’t exhaust you then you have admirable stamina! I’m pooped!

Jump to this post

Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!

Jump to this post

Good morning @brit1959 There are a number of members in the Mayo Connect forum who have MGUS for some time and also new members who have been recently diagnosed. I’ve requested that a moderator bring your question over to this group because I think you’ll find some very helpful and supportive friends here.

To get you started, this is a previous reply I gave to another newly diagnosed MGUS member just a few days ago… @mommatracy5
https://connect.mayoclinic.org/comment/733533/

Your next step will be to meet with a hematologist who is a blood specialist and will most likely have a few more tests run to determine if you have an issue with your blood.
Do you have any symptoms or was this something discovered in a routine physical/lab work?

Jump to this post

It was a routine blood test that I recently had as just joined a new surgery. Have found I've been feeling very tired all the time but put that down to the heat and just my age. Am waiting for my appt with the hematologist.

Jump to this post

Hi Becky,
Quick question...is it all vitamins in general or just certain ones?

Mittens1

Jump to this post

Hi Mittens, just had to let you know how taking something can easily turn dangerous. I think my bad guys are progressing again because my blood won’t coagulate. I accidentally nicked my fingertip and started bleeding so I wrapped a paper towel around it. They tell you that if your platelets are low or less sticky, it won’t clot. Now I have a quandary, my blood won’t clot but how bad is it. The rule for bleeding from a small cut is this, it takes roughly 5 minutes to coagulate and stop bleeding. If it doesn’t, you have a problem, looks like I have a problem but why? I know my blood is progressing to full blown cancer, to many symptoms are showing. I have the fingertip wrapped tightly with bandaids but how can I tell if I finally progressed into NHL or worse WM. How much damage will it do if it has progressed?

I don’t go to my PCP till September 13th and my next check in with my Oncologist/Hematologist till November 18th. I don’t want to get myself worked up so much that I trigger a fatal heart attack but my blood not wanting to stop bleeding has me scared. My last blood test in May shows my B Cells are messed up, low lymphocytes, immature lymphocytes and platelets with White Cells going up along with neutrophils. What signs should I be on the lookout for if I now have cancer? For some reason, my whole body feels itchy, bones in my rib cage are at a level 8 pain, kidneys are hurting and I may be passing blood. I won’t go to the ER, I’ve been misdiagnosed to many time there. HELP!!! What’s happening to me?
@becky1024

Jump to this post

This summer heat has been oppressive, hasn’t it? It does sap the energy out of a person! Makes me lose my cherub-like demeanor when it’s so hot.

I know getting an unexpected diagnosis can raise the anxiety level. If it helps any, MGUS doesn’t require treatment but it will be something to keep an eye on. So if, with a proper diagnosis, you’re found to have MGUS (Monoclonal gammopathy of undetermined significance) your hematologist will likely want to have routine bloodwork run more frequently just to make sure nothing changes.

I’m posting a link to the Mayo Clinic site with some information on the condition. This will allow you to understand a little more about the blood related issue and then you can discuss this with your hematologist.

You mentioned going to see a new doctor. Did you like the new surgery and is the hematologist in the same clinic?

Jump to this post

@becky1024 if you’re having issues with your blood clotting and your appointments are still a ways out, you can call your hematologist/oncologist’s office and let them know you’ve had a change in your blood clotting time and that you’re experiencing unusual symptoms.
They will simply order a CBC blood draw for you to check your WBC/RBC and Plateletts along with all the other usual suspects and to check for signs of an infection. Oncologists are used to changes in their patients’ health and are generally very accommodating to getting people in for blood work ASAP if needed.
Doctor’s and NPs also have built-in emergency time in their daily schedules (not the ER) if you need to be seen sooner.
If you’re passing blood and having this increase in pain level along with kidney’s hurting it could be a UTI.
So, please, just call your oncologist instead of this speculating and stress. Peace of mind is a phone call away.

Jump to this post

Lori, your suggestion isn’t possible because of a revolving door with my doctors. Unfortunately, my hospital is a teaching hospital and all my doctors are part of my problem. When I get a doctor or PA-C, that’s getting to understand how complicated my body is, they leave for advancing their position. My PA-C of 2 years that helped me discover I had MGUS and WPW Syndrome thru our research, up and left me December 2021 with an impersonal letter in the mail. My situation only got worse when my PCP from 2 years ago took me back under her wing. I had one appointment with her April 26th 2022, I believe. My body began
to fall apart and I tried to get another appointment, I did, for January 6th, 2023.

I’m just so frustrated between this freak of nature body of mine and the medical situation I’m lost in. It’s like I fell between the cracks somewhere. I know all about a UTI, also my kidneys are in dyer shape. Because of to many UTI infections and kidney damage, I’ve already seen chunks of blood clots as I urinated (not now yet). So right now, I’m between that proverbial rock and a hard place. My biggest concerns right now is the lack of platelets because of my bad guys progressing. My Oncologist/Hematologist is fixated on me progressing to MM because my brother died from it. I’ve already asked her in text messages about various symptoms that are concerning to me and pointing away from MM to NHL but she never answered lately. So I need advice on what to look for if my bad guys actually progressed to Cancer. I’ve been anemic for over 3 years, my hemoglobin is below normal and the size of my red blood cells is larger than they should be according to my last bloodwork. Something’s not right inside me now, I can feel it and battling 5 cases of Covid since May of 2020, the last was just July 2022, which was the BA.5 Variant. June 4th, I wrote 7 letters on my medical calendar that mades 3 words and tells how serious things have gotten for me. What are those 3 words?
“I GIVE UP”!!!

Jump to this post

Hi Mittens, just had to let you know how taking something can easily turn dangerous. I think my bad guys are progressing again because my blood won’t coagulate. I accidentally nicked my fingertip and started bleeding so I wrapped a paper towel around it. They tell you that if your platelets are low or less sticky, it won’t clot. Now I have a quandary, my blood won’t clot but how bad is it. The rule for bleeding from a small cut is this, it takes roughly 5 minutes to coagulate and stop bleeding. If it doesn’t, you have a problem, looks like I have a problem but why? I know my blood is progressing to full blown cancer, to many symptoms are showing. I have the fingertip wrapped tightly with bandaids but how can I tell if I finally progressed into NHL or worse WM. How much damage will it do if it has progressed?

I don’t go to my PCP till September 13th and my next check in with my Oncologist/Hematologist till November 18th. I don’t want to get myself worked up so much that I trigger a fatal heart attack but my blood not wanting to stop bleeding has me scared. My last blood test in May shows my B Cells are messed up, low lymphocytes, immature lymphocytes and platelets with White Cells going up along with neutrophils. What signs should I be on the lookout for if I now have cancer? For some reason, my whole body feels itchy, bones in my rib cage are at a level 8 pain, kidneys are hurting and I may be passing blood. I won’t go to the ER, I’ve been misdiagnosed to many time there. HELP!!! What’s happening to me?
@becky1024

Jump to this post