Like you, I think I must have had the MGus since I was in my 20's. I had anemia and a low white cell count most of my life. I was given iron, and for a while when I was pregnant Liver. The Anemia got better for a while, but seemed to be there off and on most of my life. No one has ever been very excited about it, until I suddenly had Trigeminal Neuralgia and I saw a Neurologist who ordered some different blood work, and what do you know? Suddenly , I have MGus? At my age, no one is going to get very excited about it (92) but it will be interesting. I am scheduled for blood work and a visit next month. I will try to keep you posted on my progress.
Gina5009

Hi Susan, I’m sorry to hear you’re also not being heard, and I hope you have better outcomes with a new haematologist 🙂
My inner cynic draws parallels: if heart attack symptoms were systemically ignored by the medical community and people experiencing them were consistently put at greater risk of heart damage due to their symptoms being repeatedly dismissed, there would be a totally different outcome for those medics, however symptoms of monoclonal gammopathies that out a person at risk of significant harm both directly in terms of cancer and indirectly in terms of secondary harm to tissues (amyloidosis, neuropathy, anaemia, viscosity changes that result in brain changes, high risk of fracture and spinal cord compression, etc) are acceptable for a person to experience for years without any gravity assigned to their potentially devastating outcome.
The discrepancy is just boggling as to how this kind of behaviour exists within a community of practicing professionals tasked with the care and decision making over the lives of those living with these symptoms.
I believe the enforced ignorance of the existence and impact of symptoms needs to stop, and symptoms are taken seriously - just like those attributed to a heart attack - considering the outcome is just as serious for the trajectory of a persons life.