Does anyone else have MGUS?

Our past can certainly shape our futures but we also can’t dwell on them and need to continually move forward. So for whatever your forefathers went through, though it left an indelible imprint in your thought processes for the future, it doesn’t necessarily mean you’re going to have the same outcome.
I feel badly for you that you’ve had some unusual negative experiences in the medical field. I think most of us have some war stories we’d like to forget. I have a few of my own but I didn’t let that stop me from getting the help I needed.

If you’re having newly worsening symptoms, there is no recourse but to seek medical attention. Try to put that mis-trust aside and approach this from a perspective that your doctor is trying to help you, not to lead you down a path of misdiagnosis. Over your 78 years, medicine has a changed a great deal, especially in the field of blood cancers.

You’re seeking advice on what symptoms to look for if you have blood cancer? Well, honestly, Becky, you’ve named quite a few. So I don’t know what else I can tell you except to simply call the clinic and get in sooner for blood work.

What I experienced with my blood cancer story won’t be the same for yours. But certainly 8 level pain in your ribs which can be indicative of MM, bleeding in urination, bleeding excessively from a small cut, exhaustion, Kidney’s aching, having abnormal bloodwork from past results in April, all point to getting more bloodwork done sooner than your next appointment in September.
Start fresh by looking forward. Don’t keep delving into the past and the bag of what-ifs or what should have been done or what was done. You’re at a large teaching hospital. This is where good medicine can happen. But if they don’t know you’re having worsening symptoms, they can’t help you.
So please, set your mistrust aside and call to see about getting an appointment for bloodwork.

Sadly I’ve lost faith in my Oncologist. She seems to be so focused on me having MM because my brother died from it, she excludes symptoms I have that focuses on Lymphoma. I’ve been misdiagnosed to many times because doctors use their textbook knowledge to mislead their diagnosis. My last PCP fell into that trap and wanted me to have a procedure that wasn’t needed. I guess I’ll fall back on my old reliable, playing Russian Roulette with my body. I’ll just wait till whatever happens, happens. If I lose, I’ll be dead. “C’est La Vie”! Take care.

I wish I could Lori but my upbringing and ancestors mistrust medical professionals. You see, my maternal grandfather was Native American who also did not trust White man’s doctors. It was his advice to my mother when she was young that saved my life as that 6 month old baby, that White man’s doctors said I was dying and nothing could be done to save me. Know what “dirty water” means to me, it’s what I drowned in when I was 5yo when and my heart stopped. Subconsciously, every time I pass by dirty water, my blood pressure skyrockets to this day. It took 2 years of monthly sessions with my psychologist to figure that one out.

Why do I not trust doctors or medical professionals, simple, 14 doctors from 4 different departments almost killed me. How you ask, I had level 9 chest pain that not a one of those doctors knew what could be wrong. They thought of every diagnosis except the correct one. For 45 days, that chest pain hit as many as 4 times a day, so badly I ended up on the floor in agony. When my blood pressure shot up to 211/113, they forgot about the chest pain and tried to bring it down.

Nothing worked, the lowest they got it was 209/101 and that’s how high it was when they discharged me with this diagnosis “Chest Pain of Unknown Origin!” By the time a stress test was done on me after 45 days or torture, they finally discovered the cause of the pain, 3 blocked holes in my heart. Within 25 minutes I was on an operating table and 4 hours later, I had my 1st heart attack in Cardiac Recovery. And you wonder why I won’t go to doctors unless I can trust, them and I’ve lost faith in my Oncologist and others. I’m a fighter all right, my grandfather gave me that ability because he survived the 1918 Pandemic at age 52 with 9 children, my mother was born in 1920. Thank you for your advice but what I was looking for was symptoms you experienced while your condition was presenting to you. Take care.

Hi @becky1024
I am truly sorry you are experiencing symptoms of this nature. It can be scary and create much anxiety. If I can say when I feel this way...I read a favorite scripture and pray. I do something special for myself. However, I think what is important as well is research, generate your questions for your oncologist. Let them work to find a solution to help you function and a plan to navigate this disease. You are worth it.
Mitten1

Good morning, Becky. You just mentioned that you need advice on what to look for if you’re blood abnormalities are progressing to cancer. That’s determined with a blood test. I stand by my suggestion to call the hematology department where you’re being treated to get that blood test. If your platelets have dropped that low, you may need a platelet infusion…do not delay that! And also, no knife juggling in the foreseeable future! 🙃

I’ve read so many of your replies to other members and each one states that your body is a freak of nature. I don’t believe that for a minute. We all have incredibly complex bodies and some of us develop difficult to diagnose illnesses. You’ve certainly had your share.
But you are not a freak of nature. I see you as a determined and certainly resilient woman to have weathered and persevered through all of your illnesses from birth on up to your 78 years. So, giving up isn’t something you’re ready to do. Mentally you may be ready but I think your body has proven otherwise. So be the fighter, call your doctor to get in for some bloodwork. If you have a blood cancer, again, it’s not a reason to fear the worst. I had one of the grand-daddies of blood cancers and here I am 3 years later, defiant of odds! Sometimes it’s just better to just know what’s going on that to sit and worry about what ifs.

Call your clinic!

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”!!!

My doctors surgery is very good, as for the Hematologist, that will be at the hospital. Thanks for asking. And thank you for the link have found that very informative.

@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.

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

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?