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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Jun 15 7:51am | Replies (774)

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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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Replies to "@nan77 Yes, welcome. I don’t know about your insurance coverage, but when I was diagnosed with..."

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.