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bonniecanby

MGUS

Posted by @bonniecanby in Cancer, May 21, 2012

i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc's and a lot of pain. please let me know that I am not alone. bonne

Tags: precancer, timebomb

afc

Posted by @afc, Feb 15, 2012

Recently diagnosed with MGUS and need advice.....physicians, nutrition, etc.

redocean

Posted by @redocean, Feb 23, 2012

Could you tell me what MGUS is?

Mom of three likes this
frazer1

Posted by @frazer1, Apr 10, 2012

MGUS " Monoclonal Gammopathy of Undetermined Significance, abnomal protein in blood.. My Oncologists tells me a good diet will not stop the progress of Multiple Myeloma. Just had my 2nd Bone Marrow biopsy last week, because of a significate spike in my "M" protein..which is now 2.6, when I reach 3, I then can start chemo. Last weeks blood draw(every 90 days) showed BenzJones(abnormal proteins) in my urine, so far I am pain free and MRI"s show no bone lytic lesions, (holes)...Yea! Life is Good.....

Find a Oncologist, ask many questions and the Mayo clinic can give you info on Multiple Myeloma. Wishing You a Sunny Day.

Mom of three likes this
momofthree1

Posted by @momofthree1, Oct 29, 2012

My son was just told that he has MGUS. We are so confused by what the doctor said and what we have read. He has been through lots of test, experiences pain that the oncologists says has nothing to do with MGUS( leg pain , numbness in his leg and both feet, gets very weak, unable to even work at times). He is only 44 yrs old. He has had stones many times and gets pain in both kidneys when he attempts to exercise.

bonniecanby

Posted by @bonniecanby, May 21, 2012

You too: what have you found out. I am trying to get an appointment at mayo in Rdfochester. bonnie

momofthree1

Posted by @momofthree1, Mon, Jul 4 at 8:53am CDT

We all are so confused by this and honestly do not know were to turn. Since Tom was told he had MGUS ,he has been diagnosed with multiple things. Just keeps going from one doctor to the next and no one is fixing anything. They all run test ,give him yet another label ,more meds and a return visit for three months.. He started with Migraine headaches at the age of seven, went to "horner's syndrome then "suicide headaches" within 15 years. He has kidney stones often. In 2012 went to dr over back pain ( several herniated disks) a few weeks his later his neurologist found the MGUS and sent him to the oncologist / hematologist . All the testing (blood work,bone marrow etc). Since then Heart problems,kidney cyst and aneurysm ,,numerous stomach problems. I am telling you he is in consent pain. It is so hard seeing him fall apart and no one really helping.

irvkay312

Posted by @irvkay312, Mon, Jul 4 at 4:29pm CDT

write this information to Minnesota Department of Health and ask "to whom
do I turn now?"

Something else you could do is call or contact Senior Linkage
Line--1-800-333-2433--they handle how to advise people in their needs,
esecial those who haven't got a direction to turn.

See their website too.

irvkay312

momofthree1

Posted by @momofthree1, Mon, Jul 4 at 10:00pm CDT

Thank you he is only 48 years old ,we live in Kentucky. He also has a holes in a bone in his leg.

Edited: 07/04/2016 @ 10:18pm

colleenyoung

Posted by @colleenyoung, Mon, Jul 4 at 11:36am CDT

Welcome back to Connect @momofthree1. @lisa54 recently joined Mayo Clinic Connect and is looking to connect with other people who have experience with MGUS. I'm so sorry to hear that you son's health has not improved, and that he has multiple chronic issues. It sounds like he has been going to many different specialists. Are they all within the same care facility?

momofthree1

Posted by @momofthree1, Mon, Jul 4 at 11:49am CDT

They are but he is just getting worse and as his mother I understand why he is now depressed and will not even go to the hospital when he should. He says "why Mom you know they won't help and I do know that . I don't understand but I continue to pray that he gets help somewhere.

colleenyoung

Posted by @colleenyoung, Mon, Jul 4 at 12:03pm CDT

How wretched that must be to watch. Is getting a second opinion from Mayo Clinic an option?

momofthree1

Posted by @momofthree1, Mon, Jul 4 at 12:41pm CDT

When he was first diagnosed they mentioned a study in New Jersey but our family could not afford the flying back and forth. I will talk to him about this.

colleenyoung

Posted by @colleenyoung, Mon, Jul 4 at 12:53pm CDT

Should Mayo Clinic be an option, here are the contact numbers for all 3 campuses in Minnesota, Florida and Arizona http://mayocl.in/1mtmR63 The people answering the phones are very knowledgeable. There may be a variety of different consultation options, for example some people come to Mayo once and then continue care closer to home with their local care team in consultation with Mayo experts.

There are several members who could share their experience with you about care at Mayo if you and your son are interested in their stories.

momofthree1

Posted by @momofthree1, Wed, Jul 20 at 8:46am CDT

Yes , they are all in the St.Elizabeth medical group , he has" bandaids applied " to all concerns. Maybe that is all that can be done, I don't know but if it is why can't they say so. He just got out of the hospital with a lodged kidney stone and diverticulosis. It just never stops. Sorry about complaining, I do appreciate all the info and hope to get the time to learn about how to use this site and communicate with others very soon.

j42smith

Posted by @j42smith, Jul 11, 2012

Hi,
Is there anyone out there that can help me get some insight into the disease. My father was just diagnosed monoclonal gammopathy, and i've read some literature, but I want to talk to someone who has actually had a loved one go through the same thing. The doctors are not offering any treatments for him, because of his diabetes, and renal failure. He also has a clotting disorder. The doctors also told us that they do not recommend him for chemo with all of his other health issues.

Edited: 02/28/2014 @ 12:35pm

anne1960

Posted by @anne1960, Jun 25, 2012

My red blood cell count is 3.75. I have MGUS- precursor multiple myeloma. I do not feel well tired. My oncologists says my count is normal, I. Disagree, I feel well when it is around 4.25. @rowanwolfe

Edited: 07/03/2016 @ 5:08pm

lisa54

Posted by @lisa54, Sun, Jul 3 at 4:45pm CDT

I also have MGUS and it sucks. I get the run around at Roger Maris Cancer clinic where I go. Please stay in touch I would like to chat and perhaps exchange ideas

lisa54

Posted by @lisa54, Sun, Jul 3 at 4:55pm CDT

you are not alone...I go to Roger Maris Cancer Clinic in Fargo ND. I live at the border of MN in a city called Moorhead. It's a long drive to Mayo Clinic in Rochester. Feel free to send me a line

bonniecanby

Posted by @bonniecanby, Mon, Jul 4 at 8:41pm CDT

Hi there, I have been off this chat line for quite awhile. This is a fast explanation of what has been going on. My numbers are stable which both my hematologist and I can only credit the 7 grams of curcumin that I take daily. I also have got the anemia controlled by the b complex injections That I get weekly. I also have a-fib with all the problems that that disease entails. I have osteoarthritis and osteoporosis and get injections fpr that. I have had had two compression fractures in the last 6 months caused from falls and am now scheduled for a knee replacement on wed. I have IGM mgus. Is this all connected I don't know. However many of us are suffering with the same things. Any onne can send me a message at anytime.

colleenyoung

Posted by @colleenyoung, Mon, Jul 4 at 9:50pm CDT

Welcome back to Connect, @bonniecanby. You'll notice that the community has had a major renovation and rejuvenation since you last visited. I hope you'll poke around a bit. For example there's lively conversation here about A-fib where you can connect with other members managing their condition well http://mayocl.in/29iD8aJ. Likewise here for Managing osteoporosis http://mayocl.in/29cSR8d and other related discussions in the Bones, Joints & Muscles group https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/?tab=discussions

I'm sure @lisa54 appreciates the update on your MGUS. She recently joined Connect.
I just did a quick review of research regarding curcumin and MGUS. While the studies look promising, long-term side effects are still being studied. It is recommended to take with clinical supervision as you are doing with your hematologist. Do you know how the dosage of 7 grams was decided?

bonniecanby

Posted by @bonniecanby, Tue, Jul 5 at 8:22pm CDT

Actually the dosage was is Margaret's corner. I started much lower and built up the dosage to 7 grams. My hematologist is recommending this dosage to some of he other patients. and having good results. I am being closely watched by him.

colleenyoung

Posted by @colleenyoung, Tue, Jul 5 at 10:00pm CDT

What is Margaret's corner?

billh

Posted by @billh, 5 days ago

MGUS has a long name and what it means is that there is an extra M protein in your blood. I was diagnosed with this about 5 years ago and my blood is checked every 6 months to make sure that the protein level is stable. I have no special diet or any treatment. I see a hematologist/oncologist for monitoring. If the protein level changes, then further testing is needed. Yes it is kind of like a time bomb, but I have my faith and that allows me to keep going.

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