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Anyone else have Symptomatic MGUS?

Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)
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@nancy1900

Hi mguspixi25,

I am doing well. As I mentioned it is more common in folks my age. And it is a waiting game at this point. But it is good that YouTube has so many good doctors out there that are very helpful. As I said Dr. Durie has many videos. Brian G.M. Durie, MD, is a hematologist from Scotland originally and has been in the US for a long time. He is very well known. The internet is a great source of information and studies. There are many studies on MGUS.

I have access to good doctors. And my family practice doctor and my hematologist took it seriously from the beginning. I was diagnosed in August of 2022.

I am sorry that you don’t have access at this time to participate in studies. I hope that will change soon for you.

There is currently no treatment for MGUS. Just living a healthy lifestyle and mitigating stress in my life are both great options for now.

Take care.

Nancy1900

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Replies to "Hi mguspixi25, I am doing well. As I mentioned it is more common in folks my..."
mgrspixi25 | @mguspixi25 | Jun 23, 2023

I’m glad you’re doing ok nancy1900 and thanks for the additional info - I really appreciate it.
Thank you for your kindness, it’s really nice to feel supported, and your words do make a difference 🙂
Yes; the trial in Melbourne Victoria was to see if treating high-intermediate risk MGUS would prevent progression to SMM/mitigate symptoms. It would’ve been awesome to be included if it wasn’t for the ineptitude and apathy of the public health system I’m currently dealing with. Not all staff are this way, however the public system here is not geared towards helping patients unfortunately, so those excellent staff inevitably end up leaving through sheer frustration, heading for private practice - which sadly widens the gap between appropriate and timely care, and what you get when you have no access to the private systems and are left to the public.
Not to worry, these systems of inequality have been in place for centuries in one form or other, and so it’s nothing new.
A healthy life really does help, and it’s an aspiration I still aim for as much as I can 🙂

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