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Blood Cancers & Disorders | Last Active: 4 days ago | Replies (774)
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I pray you are doing well with your treatment. I was diagnosed with MGUS a year ago, but I suspect I've had it a few years before diagnosis. When you had MGUS, did you ever experience a feeling of wooziness? Not dizziness. It's a feeling like I'm drunk! Worst when I stand (it is not my blood pressure), better when I sit down, and goes away completely when I lie down. It sounds positional of course. I have an appt with my ear nose throat doc at the end of August (took 4 months to get in to him!). Hematologist doesn't think it's from MGUS, but I wonder. I've seen a neurologist/neurosurgeon, endocrinologist, and of course, my PCP. No one can figure out the cause so far, and it has become debilitating.
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Don’t worry about how or when. It’s difficult not to keep something so devastating in the forefront but keep active and healthy and pray. Something will send you to the doctor and X-ray will confirm progression.
I had aches and pains periodically but only saw a doctor every 2 years to keep track of my numbers. Maybe that’s why MGUS took so long because I didn’t live it.
I developed ear problems with MM and thought I was going deaf. The prescription ear drops did not work. I got better by bulking my omega-3s and tracking my water intake.
Maybe a CBC blood test to rule out deficiencies or infection and might be good baseline to have for your appointment in August.
It is hard to get doctors to listen and pay attention because you cannot read this disease in a medical book. All of our baggage will help someone in the future.