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bonnie canby (@bonniecanby)

MGUS: Please, let me know I not alone

Blood Cancers & Disorders | Last Active: Jan 19 5:56am | Replies (86)

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

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

Could you tell me what MGUS is?

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.

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

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.

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.

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?

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.

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

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.

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.

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

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

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