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Although I am now a multiple myeloma patient, and on treatment for that since 2021, reading the stories here makes me wonder. Officially I was diagnosed with MGUS in 2017, progressed to SMM in 2018, and to MM in 2019. But before all of that, back even to the late 1990s, my iron was low and labs were inconclusive. Doctors said it was due to my fibroid tumors, and I had a hysterectomy in January 1999. But truly, I have been wondering if it was MGUS all that time, as there was no testing done. My insurance was an employer sponsored HMO, notorious for not looking into special testing [that might cost more money!] I had no clue about MGUS and all.
That said, it is so important for us to be our own healthcare advocates. In these times of bountiful accurate information available to us, it is imperative we educate ourselves! Not be scared, and take into account our own best healthcare interest. Yes, even when that means being a "thorn in the side" of our medical team!
Just reflecting here today, and wondering how things might have been different years ago, for me....
Ginger
Replies to "Although I am now a multiple myeloma patient, and on treatment for that since 2021, reading..."
@gingerw Re: your "wondering how things might have been different years ago, for me...." I wouldn't wonder. Even assuming your anemia/low iron was due to MGUS rather than the more likely GYN issues, you wouldn't have been treated in any event, since that is even now the standard of care for both MGUS and SMM in the absence of other factors. (As it turns out, I may be one of the exceptions to that, depending on the pending results of last week's kidney biopsy.) Moreover, you were being monitored appropriately, as the SMM and MM were apparently diagnosed promptly. So a non-diagnosis of MGUS years before would have made no difference. No reason to blame yourself (or even wonder).
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@gingerw hi Ginger. From what I understand, low iron is quite common and not necessarily related to MGUS although I agree with you in your questioning. I wish they had of looked into my low iron sooner and given me injections a long time ago when the numbers were first low. I also have fibroids and battle with heavy cycles so they’ve always thought it was that as well. I agree with you to an extent on the education oneself aspect, yet I’m finding it’s also causing me more anxiety the more I read. I had a phone call with the nurse at the cancer centre I’m a patient of and she told me to just keep living my life as if I never was I told anything. I wish!