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.