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MGUS Symptoms: What symptoms did you experience?
Blood Cancers & Disorders | Last Active: Oct 31 9:39am | Replies (117)Comment receiving replies
A hematologist/oncologist is the person to see.The community doctors have a fairly decent population of MGUS cases and they are mostly well so they do not pay attention to subtle changes. I suggest at least an annual consultation with a Hem/Onc. They know the disease and tend to it properly. If you have a teaching or academic medical center near you I strongly suggest you call the Center and make an appointment with a hematologist/oncologist. Entirely different attitude and approach to MGUS. They take it more seriously but do not go overboard with treatment etc. THey understand the symptoms and how they relate to MGUS. THey will get a baseline on you and recommend timely treatment or watchful waiting, for you. IF early in process or low risk they will evaluate annually. If things change then it gets more frequent.
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@sunsetchris
Yes, I agree. I saw a hem/oncologist about 2 years ago, here, but I just felt I was wasting his time, as my MGUS was such a seemingly "innocent" condition and his waiting room was filled with cancer patients. Made me feel so guilty for being there, taking up space. We decided that my primary could monitor the M-spikes. The local specialists and primaries just don't seem to understand the symptoms I have that just come and go and because I seldom experience them when I'm there, it seems they just want to move on and send me home. I've seen rheumatologists, neurologists, orthopedists, podiatrists, cardiologists, hematologists/oncologists, you name it. They all note some sort of connective tissue disorder is likely but no one, so far, really ever seems to want to even try to find out which one. I've had 3 foot surgeries, stress tests, X-rays, PET scans, MRI's, CT scans, stress fracture of my left ankle, gall bladder removal last year, blah, blah, blah. Used to get chronic sinus infections and bronchitis all the time, (years ago), UTI's, basal cell carcinoma a few years ago, cyst and lesions up and down my spine, just all so weird. It may be time, I think though, to see if that last hem/onc would be willing to see me again and get serious about discussing my MGUS as the reason for some of this. THANK YOU for your helpful and supportive words! Meant sooooo much!
Dawn