Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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Yes, I have 10% monoclonal plasma cells in my bone marrow. Sorry for the confusion.

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Hello:
I also have had MGUS for several years, and had a full work up initially to get a baseline, and to make sure nothing concerning was going on. The PET scan is to see if there are lesions in your bones, which would be important to know. All being thorough, which is a +.

To clarify- do you mean you have 10% monoclonal plasma cells in your bone marrow?
What is the amount of the monoclonal protein spike ? It’s usually in grams/dl.
There are several tests that will be followed and the doctor should review everything for you.

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I’m waiting for the official diagnosis of MGUS or something else. I fell while standing beside someone with whom I was having a lovely conversation. I wasn’t injured, but I checked my blood pressure and discovered it was high for me. So I called to see if my GP wanted to see me, but she booked. She referred me to a brand new doctor who was extremely thorough in his examination, conferencing, and in the number of in-depth tests that he ordered. After all of that, I expected a follow up visit, but instead, I got a phone call from a nurse who said, “all of your tests are fine, but you do have too much protein in your blood so we’re sending you to a hematologist. Is that okay with you?” That’s it! Long story, short…the hematologist had done an in-depth look at my prior records and congratulated me on having such a thorough doctor. He felt that I probably had MGUS but he would have to do some other tests to make that determination. I wish that I had been better informed before seeing him. I had no idea how to prepare for that first visit. However, this is where I am right now: I have had lots of bloodwork done, a full body x-ray, 24 hour urine test, and a bone marrow biopsy completed. The doctor’s nurse has called me after every test to tell me everything is “fine” except for the bone marrow biopsy indicated that my M spike was 10%, so he recommended that I have a PET scan to “get the whole picture.”

I’m concerned about that test and I’m hoping it truly is simply for the purpose of completing the “whole picture,” and not because it’s something else.

Have any of you had a PET Scan as part of your MGUS diagnosis?

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That's so kind of you. Thank you so much.

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@gingerw and @pmm
I will keep you posted. Thanks for letting me vent and for the support. These posts have kept me sane.

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@nan77

Thank you so much for sharing your experience, the information you found and appreciate your advice. I am presently a patient with Mayo Clinic and had initially gone to the neurologist that specializes in Charcot-Marie-Tooth Disease. He did extensive blood work and this is when the biclonal gammopathy was found. I will definitely push for the hematology oncologist referral. I am so glad that you have been blessed with a doctor who cares. Will post what occurs with my visit in July. Thank you again.

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@nan77
Oh good! You are in excellent hands at the Mayo Clinic. I’m glad you will advocate for your care. Wishing you the best possible outcome and I am looking forward to hearing more about your journey.

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@pmm

@nan77
Yes, welcome. I don’t know about your insurance coverage, but when I was diagnosed with MGUS, I did not need a physician referral to see a hematologist/oncologist. I researched by calling around and talking to doctors, patients online and especially nurses who work in the field (they are very opinionated 😂) I was unable to get an appointment with my first choice, but I am very satisfied with the specialist who is treating me.
When I was first diagnosed I read a lot on the internet but I find that that glass is half empty from the vantage of being three years post diagnosis. I needed to sit in the room with a seasoned hematologist/oncologist who treats MGUS, Smoldering and Multiple Myeloma. I have great specialists for other things, and my PCP is first rate, but blood disorders are very complex. I wanted the best I could find. Even now, if my MGUS progresses, I will go to Mayo for a second opinion.
Sometimes you have to decide for yourself what is in your best interest and make it happen.
I did a quick search of the posts to see if I could find someone posting on biclonal gammopathy and came up empty. It looks as though it runs a similar course to MGUS , but you really need to talk to a medical provider. You might feel reassured. Anxiety is a bear to deal with.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5780647/
Please let me know how this goes for you. Do you live near to a teaching hospital or cancer center that treats MGUS, Smoldering and Multiple Myeloma?

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Thank you so much for sharing your experience, the information you found and appreciate your advice. I am presently a patient with Mayo Clinic and had initially gone to the neurologist that specializes in Charcot-Marie-Tooth Disease. He did extensive blood work and this is when the biclonal gammopathy was found. I will definitely push for the hematology oncologist referral. I am so glad that you have been blessed with a doctor who cares. Will post what occurs with my visit in July. Thank you again.

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@nan77
Yes, welcome. I don’t know about your insurance coverage, but when I was diagnosed with MGUS, I did not need a physician referral to see a hematologist/oncologist. I researched by calling around and talking to doctors, patients online and especially nurses who work in the field (they are very opinionated 😂) I was unable to get an appointment with my first choice, but I am very satisfied with the specialist who is treating me.
When I was first diagnosed I read a lot on the internet but I find that that glass is half empty from the vantage of being three years post diagnosis. I needed to sit in the room with a seasoned hematologist/oncologist who treats MGUS, Smoldering and Multiple Myeloma. I have great specialists for other things, and my PCP is first rate, but blood disorders are very complex. I wanted the best I could find. Even now, if my MGUS progresses, I will go to Mayo for a second opinion.
Sometimes you have to decide for yourself what is in your best interest and make it happen.
I did a quick search of the posts to see if I could find someone posting on biclonal gammopathy and came up empty. It looks as though it runs a similar course to MGUS , but you really need to talk to a medical provider. You might feel reassured. Anxiety is a bear to deal with.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5780647/
Please let me know how this goes for you. Do you live near to a teaching hospital or cancer center that treats MGUS, Smoldering and Multiple Myeloma?

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@gingerw

@nan77 Welcome to Mayo Clinic Connect. I agree, biclonal gammopathy is indeed a rare animal. If you put just that into your search engine, you will find several scholarly and long articles about it.

What is your hematologist oncologist telling you about a treatment plan?
Ginger

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My neurologist said we would discuss going to hematologist oncologist when I see him in July. I will keep searching for information. Thank you for your suggestion.

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@nan77

I was diagnosed with MGUS in 2022 and CMT. Have had fibromyalghia for years and osteoarthritis, along with IBS, diverticulitis, etc. I have recently been diagnosed with biclonal gammopathy. I see my neurologist in July for discussion and exam. It is my understanding that biclonal gammopathy is rare. Have researched everything I can, but not much information. Please let me know if anyone has been diagnosed with this. Any input is appreciated.

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@nan77 Welcome to Mayo Clinic Connect. I agree, biclonal gammopathy is indeed a rare animal. If you put just that into your search engine, you will find several scholarly and long articles about it.

What is your hematologist oncologist telling you about a treatment plan?
Ginger

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