Connect
← Return to Does anyone else have MGUS?
Discussion
Comment receiving replies
I have had MGUS for 4.5 years. The strategy has been to monitor it with blood tests. The changes of it become a cancer is 1 to 2% per year. How ever mine just added Amyloidosis to the MGUS. It’s a bit more of a problem, but not uncommon for MGUS to add Amyloidosis. Talk to you doctor to be sure he’s watching for this, he probably is. My showed up first when I had carpal tunnel issues in both hands. It is not unusual for people with MGUS to have this because Amyloidosis is a build-up of small proteins similar to the pieces of protein associated with MGUS, just a decent question to ask your doctor about. Hope things go very well for you. It’s possible you could have MGUS until you pass away from something else and it may never cause you a problem.
Replies to "I have had MGUS for 4.5 years. The strategy has been to monitor it with blood..."
Connect
It is definitely more likely that one will die with MGUS as a benign and asymptomatic condition in the blood plasma.
However, those with a dx that comes earlier, in middle age, may need to remind physicians that chances of progression of neuropathies, amyloidosis, renal involvement, and even malignancies are a bit greater as the years accumulate.
Personally, I lost the one doctor who really looked out for my well being more than the others. I have since experienced a lot of dismissal regarding my MGUS Dx. Recently a neurologist told me there is no connection between MGUS and the peripheral neuropathies I experience (he Dx me with fibromyalgia in a new patient visit). One oncologist even said he thought I had been “over monitored” and suggested I follow up with another serum protein electrophoresis in three years. I thought that might be erring on the neglectful side of things and sought another opinion.
The next hematologist actually ordered testing for amyloidosis and this has been discovered in my bone marrow sample.
Being aware of our symptoms and advocating for self is crucial for good care.
I may find this exhausting and I do not like having to seek second opinions or being judged by physicians and considered a hypochondriac.
However, knowledge is power. Without information about our bodies and their current state we will not have access to proper treatment.
It’s difficult to be in a healthcare situation in which I may be the expert in some regard.
In terms of intuition and the experience of symptoms, we are the experts and must communicate in order to be heard.
I am finding that I must try again and again in different settings until I am certain that I have been heard.
If I had given up in my frustration and because I was delayed by six months of infections and fevers, I would not have arrived at a place now providing the monitoring, help, and treatment my body needs.
My hope is that the doctors who dismissed my concerns over the last year or two in clinic will continue to encounter information about MGUS and the small percentage of patients who are symptomatic. The condition may be benign, but may also pose danger to overall health and well being.