Hi there nancy1900, thank you very much for your kind reply and wonderful suggestions. I want to apologise - I am in Australia, and I am working with the public medical system so I do not have access to a second opinion without a long wait list that would leave me without any monitoring by haematology for over a year (currently I have a 10 min consult with the haematologist each 4-5 months, which has been the case since august 2021). A research university in another state said I would be a perfect candidate for their MGUS study, but my doctors refused to swap me to the haematologist who was the lead in my local hospital, which meant that the potentially helpful treatment was effectively out of reach (the team in Melbourne tried really hard to get me in their trial, but the team at my local public hospital just wouldn’t play ball, and threw all obstacles they could to prevent having to swap me to the other haematologist).
I’m really sorry to hear you’re also having symptoms, and I hope your team continues to take it seriously and follow up. Thank you so much for the suggestions on interesting things to follow up on - I really appreciate it!
Stay positive, and thanks again for your support 🙂