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← Return to Always run down with MGUS
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I still experience severe fatigue...it comes on suddenly and sometimes lasts for a few months, then all of a sudden I'm good again...can't figure. But I told my primary again because I get all achey and my glands in my neck hurt. She tested me for auto immune disorders and nothing showed up. My oncologist at mayo replied to a message I sent asking him if he would look further...he replied I'm a low risk for myeloma to ask my primary. I give up, been years of feeling this way...im able to stay active but on those days I'll cut it short. I posted on another thread here this oncologist dr has not re-scheduled me for anymore appts....i asked twice if I no longer need testing for mgus...they have not replied.
My care team there has not responded ...my bloodwork otherwise is all good, and last few tests for mgus only picked up a trace...so im not going to bother asking again. I just wanted some update whether I'm a patient any longer...after all the testing I went through , over the years, including a bone marrow biopsy...but hey, I'm not complaining...seems some how I've improved.
Those of us that experience that severe fatigue, I sympathize with you...no one can understand what it feels like to drag yourself and feel beyond fatigued.
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Unresponsiveness from a medical team is very concerning. I don't know how invested you are in that particular team but were it me, I would be escalating my concern to someone connected with the facility. There are generally social workers or patient care advocates… Administrators… Someone. One thing that I learned from being a medical social worker is that patients must advocate for themselves. We can't just get angry about it or chat about it with friends and family, we have to confront it head on.
I am not a physician but I do know that it is important to be tested on a regular basis. Some MGUS patients are tested every three months, others who are considered low risk every year. I go in every six months… I am a higher risk but my blood analysis numbers have been very stable. I am comfortable with this.
I don't know your location or the availability of other hematology/oncology physicians in your area, especially those with experience in treating multiple myeloma. But you might consider a second opinion if you want to stay with your current providers.
let me know how this goes for you. I'm rooting for you.