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bonnie canby
@bonniecanby

Posts: 15
Joined: May 21, 2012

MGUS

Posted by @bonniecanby, 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

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

@afc

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

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Could you tell me what MGUS is?

Liked by Mom of three

@afc

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

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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.

@afc

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

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

@afc

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

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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.

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.

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

@anne1960

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

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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

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

@afc

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

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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.

@afc

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

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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?

@afc

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

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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.

@afc

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

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

@afc

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

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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.

@afc

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

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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.

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