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Does anyone else have MGUS?

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

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@fayeraye

Wow, I’m learning so much from all of you in here. I’m going to definitely see the specialist. I have no idea why my doctor wants to wait. It makes no sense. Thank you so much. I’m very glad your husband is better.

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Replies to "Wow, I’m learning so much from all of you in here. I’m going to definitely see..."

@fayeraye Sometimes our primary doctor is overwhelmed with the busyness of their practice these days. You "drive the boat" and need to advocate for yourself. Find out from your insurance if you can self-refer to a hematologist oncologist that they cover. If not, go back to your primary and insist on a referral now. It may take going to his/her PA.

I look forward to hearing what you find out!
Ginger

Good morning!
I am going to vote with the majority here and advocate for a specialist. PCP’s read about MGUS in their training but it’s not as juicy a diagnosis as something that requires surgical or chemical intervention, I suspect. Watch and wait isn’t all that exciting for them.
For us it’s good news. They watch our numbers carefully, drawing blood quarterly, semi-annually or even annually. No treatment unless you meet the treatment threshold. Yay!
BUT the physician examining those numbers needs to be the best-trained, most experienced doctor you can find. I don’t know where you are and what’s available in your area but for me, I asked lots of questions of physicians friends and patients to find a good match. It’s frustrating because they are also busy. I could not get into my first choice physician, but I asked her who she would see if she were in my shoes and she recommended my current oncologist/hematologist. I have a lot of doctor and nurse friends since I worked in a Children’s Hospital for 15 years as a medical social worker. I definitely had an advantage. Short of that, there may be a multiple myeloma support group online that can help.
Avoid Google and Facebook MGUS pages. There was so much misinformation on Facebook. It nearly made my head explode.
The watch and wait does seem a bit maddening sometimes if I allow myself to think about it but I am about three years out from my MGUS diagnosis and it is easier all the time for me to just go about my life and not worry. You have to remember that the statistics are on your side for no progression to smoldering or multiple myeloma. Keep your glass, half full and not half empty.
I’m delighted that you found this group and I hope that you come back and let us know how things are going for you on your journey.
Patty