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Anyone else have Symptomatic MGUS?

Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)

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@mguspixi25

Hey there Leslie2121, I’m sorry to hear of your MGUS diagnosis, however it is very pleasing to hear that you are asymptomatic 😀🌺 Would you mind please sharing - if you feel comfortable to do so - your type? I’m IgG Lambda (low IgA).
I would agree that the meds directed at treating plasma cell monoclonal gammopathy aren’t ideal for a range of reasons, when it comes to approaching symptomatic MGUS, considering the volume of plasma cells to be targeted and that end up being effectively treated do not outweigh the side effects (both long and short term).
Having said that, it would be a pleasant approach to have some proactive care in terms of symptoms when they are causing some damage; for instance, in my situation I’m having high calcium levels, Bence-Jones proteins in urine, and peripheral neuropathy (amongst other MGUS effects), and so to have some help regarding these would be very much something to smile about 🙂
From what I’ve read (and I admit I’ve been a little lax on research review these last couple months due to another project), the research isn’t definitive or at the stage of general population application in terms of treating MGUS proactively to prevent progression (however, if this is not correct, please do feel free to correct me on that).
I’m very pleased to hear you found someone to review your case: may I kindly ask how it went with Dr Mikhael? I hope there were some helpful things that came from your appointment 🙂
I’m in Australia, and with our systems here it can be challenging to get a second opinion, and I’ve personally found it a challenge to access medical professionals outside of Au (however I’d like to say that to date I haven’t tried to contact Dr Mikhael, who may or may not see international patients🙂).
Thank you for your message, I really appreciate your kind suggestions.

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Replies to "Hey there Leslie2121, I’m sorry to hear of your MGUS diagnosis, however it is very pleasing..."

I don’t know exactly all my lab results other than I don’t have any of the problems you mentioned ( the CRAB criteria) & my light chains are slightly elevated but ratio within the “normal range “.
I don’t know if Dr Mikhael takes international patients but I would think so since he collaborates with researchers around the world. He does a lot of second opinion consultations for reasonable amounts. He’s in Flagstaff, Arizona.
He was very kind & reassuring to me. He was happy to keep seeing me virtually every 6 months but I didn’t see the need. He didn’t recommend any interventions for me other than healthy diet/weight, exercise etc.
I’ve always wanted to visit Australia & New Zealand- hoping to this November.
All the best to you!