Does anyone else have MGUS?

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?

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.

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?

It’s better for you to be pooped than the two kids. Sadly my older brother is in 5th stage dementia headed for 6th, so he has to wear diapers too.

Unfortunately, I was born defective and have been dying since the doctors told my mother to take me home because I was dying and nothing could be done to help me when I was 6 months old. It’s been a downhill battle ever since for the last 78 years. .

Had to check in my my doctor less than a week ago as they found d something in my blood, he then goes on to tell me I have a condition called MGUS.
He didn't explain anything that I understood and said was referring me to the heamatologis.
All I know is what I've read online. Am still learning and wonder what should I expect.

Thank you for your honest answer- much appreciated. I have an appointment to see my local oncologist next month and I can ask her as well. Then I see my other oncologist in November. I will continue to do my research so I can have a laundry list of questions to ask during my visit. I am part of a research study on MM through Dana Farber. I will also request another biopsy to see it I have crossed over to SMM. The last one stated I was approaching 10%, but less than and they did not give a specific percentage. I figure after (1) year, I would like to see what the #s.
Thank you again.
Mitten1

That’s the problem with vitamins and minerals in pill form or even foods like cereals. The government gives you guidelines as to how much you should have daily. Unfortunately, almost any vitamins or minerals you take add up. Pretty soon you’re past the daily recommendation. Your question is complicated to answer. A vitamin can increase or decrease effectiveness of certain medications. For instance, I love tomatoes but not store bought ones only farmer grown locally. That means starting in June thru November, I gorge myself with them. That’s bad for my kidneys and blood because it becomes acidic, to much acid in my blood.

That creates a happy time for certain types of cancer cells that just loves acidic blood to multiply. So while my kidneys pay the price, my baddies are swimming around inside me having a festive time. Yet there are other cancers that hate an acidic blood because it slows up the production of that cancer.

So to try and answer your question honestly, yes. Anything you put in your body can help or harm you, vitamins included. Even how much you take could hurt you and can cause serious side effects. If you’re tying to help your body and conditions, you have a lot of research to do. Right now I’m deliberately hurting my body because I stopped take a multi vitamin, a mega dose of Vitamin B Complex, plus Folic Acid.

I could literally be causing major and permanent damage to my body and brain, just to prove a point to a geneticist that the small intestine problem is being caused by a genetic birth defect I’ve had to deal with all my life. I’ve only been off them 10 days and I’m already in serious trouble with my heart, kidneys and brain.

So if you’re going to try and help you body, you need to ask this question on google for each thing you want to put in your body exactly like this example. “Is Vitamin E bad for my body?” Or “Is Vitamin E good for my body?” You’ll have plenty of research information to keep you busy. I’ve spent over 100 hours to discover my bowel problem is genetic and dangerous to me. My only living brother had a gallbladder operation, that’s a major, MAJOR discovery because of what the gallbladder does, or rather doesn’t do in the body. Take care, hope this rambling post is of use to you. Becky1024

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

Mittens1

Yeah, I know what you mean about numbers. My new pcp wanted to get notes from my doctors but there are just to many. If I were dead, I’d be a zombie. With so many parts of my body failing, I chose the top 7 doctors that are keeping me alive. The medical problems are so serious, any one of the 7 will kill me, sooner or later, preferably later. Heck, 3 of them are genetic defects and 5 of them are birth defects. It’s a losing battle mom, take one step forward and then two steps back. No wonder the doctor physically had to pull me out of her. I probably wanted the safety of being inside her, knowing what was waiting for me out here.

My poor body is being ravaged by to many bad guys. The doctors can’t focus on one disaster without another doctor stepping in the way. I don’t even have a fighting chance to choose what I want them to focus on, my blood or heart because they’re involved in a major battle inside my body. My brain is ready to jump in anytime, throwing disaster bombs. Get this, a mini stroke, seizures, peripheral neuropathy that’s robbing me of both legs, feet, arms and hands. Now it added a level 9 head pain over the entire head. Gee mom, who can I laugh at, if I can’t laugh at myself. Mom, just remember, I have 4 more things trying to knock me off here, got any more surprises? I have more things wrong with me I could put on the list but I’m already depressed enough. I’d cry if it wasn’t so serious but I did enough of that last night.

Take care of yourself Mitten, just think of this saying. “I cried because I had no shoes, until I met a man who had no feet.” Things can always get worse, like last night. I saw a woman pushing a man in a wheelchair, he had no legs at all, wow!!!