@laurinea greetings! I’m glad you found us.
I don’t know why medical professionals don’t sit patients down and talk to them expeditiously. I know they’re busy, but I don’t know why they make you live with your anxiety so long.
The truth is, unless they find some comorbidity, they probably are scratching their heads a little bit about your symptoms. Typically MGUS is benign. But… There are a bunch of us that do have symptoms that we assume are related to MGUS because they can’t find another etiology. 🤷🏼‍♀️
I have neuropathy in my feet. Frequent nausea… gastrointestinal issues, malaise, hot flashes…loss of appetite. I had all of that after MGUS was diagnosed. My white count went up…I was sure there was something horrific going on. Turned out to be Dr Google induced anxiety.
Your symptoms preceded your diagnosis so you know that’s not the case for you.
Call your Dr and insist on having a sit down sooner than later. I am polite, but insistent. Write all your questions down and ask for an explanation for your symptoms one by one. Ask for referrals to specialists if your physician does not believe they are MGUS related. You need answers. If you feel that you need an advocate ask if there is a medical social worker attached to the practice. If you go it alone, keep calling. Show up. Offer to sit in the waiting room until you wear them down.
MGUS is a condition that typically does not advance to multiple myeloma. It is a condition that requires watchfulness for the rest of your life, however. So find the right fit in the form of a hematologist/oncologist, who is diligent, answers all your questions, and is available for you. Your doc may not have the best bedside manner, but you want an excellent clinician who has a great deal of experience treating full-blown multiple myeloma.
Please let us know how are you are doing and I think you’ll find that everyone who posts here has a different story… Different journey… Different symptoms… No symptoms…
Try not to carry anybody else’s burdens. Your situation will be unique among us.
Best wishes,
Patty