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Anyone else have Symptomatic MGUS?

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

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@mguspixi25

Thanks so much for your kind support Ginger, I really appreciate it 🙂
I’m sorry you’ve had to go through that journey, and it’s great to now hear you have compassionate care from your current oncologist. I’m unable to get a second opinion without going without monitoring for extended periods and I’m concerned it’ll result in delay in potential disease advancement discovery to SMM considering I’m high-intermediate risk, with symptoms. I live in Australia so getting private quality care is extremely expensive, and I do not qualify for private health insurance due to having way too much pre-existing health conditions (so the way I understand it, what is already in existence is excluded of has long waiting periods before it’s covered, and the monthly premiums would be extremely expensive due to a combination of existing diseases and age). The last private specialist I saw cost $450 for 15 mins, and the out of pocket was around $420.
So I’m within the public health system. I’m thankful to have it, however the wait times are in the years.
I actively advocate within the current system (both with the medical staff I interact with for my own medical situation, as well as on a state and federal level, raising awareness with govt and other organisations for the benefit of vulnerable people in society) however there is somewhat little onus for medics to be receptive / responsive to individual patient needs, so often individual circumstances are overlooked (like social situations, variances from mainstream symptoms or unusual reactions to mainstream treatments - in my case, due to not responding to treatments, I have been declined further care because I do not fit the current offerings of meds/standard of care.
Hence why I engage in systemic advocacy 🙂
Thank you again for your reply, I really appreciate it!

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Replies to "Thanks so much for your kind support Ginger, I really appreciate it :) I’m sorry you’ve..."

mgrspixi25 I'm so sorry to hear about your struggles there, including the wait times. I'm recently diagnosed IgA MGUS and dual AUS/US citizen. I've been considering moving back to NSW or VIC for what I thought would be more affordable and prompt care compared to the U.S. public healthcare system (I don't qualify for US Medicare or Medicaid, so pay for minimal care on our state health insurance.) I have family at Wollongong and friends throughout the system, and I used to work on cross-state research coordination, so am frustrated to hear about the barriers.