MGUS: Please, let me know I not alone

Posted by bonnie canby @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.

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@afc

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

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Could you tell me what MGUS is?

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@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.

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@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

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<p>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</p>

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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.

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@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.

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@anne1960

<p>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</p>

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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

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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

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@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.

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