Hi.
I am a 52 year old father of one (19) and husband. I have been diagnosed with smouldering myeloma with a clean mri but 10%-20% bone marrow involvement from the sample taken from my hip. FLC ratio was 32 when last tested. I have the IgD variety so who knows what that will mean in the end. I was classed as intermediate risk but we do not yet have the cytogenetic test results so maybe that will change.
I am completely asymptomatic so this was caught from some blood work done around blood pressure issues.
We got through the month between initial consultation and yesterday’s meeting with what I imagine are everyone’s rollercoaster of emotions. Every body ache, sniffle or sneeze leaving my worried it is a sign of progression that does not yes show on the tests. I’ve seen a few posts here of people saying their consultants not registering their feedback about aches against progression if it does not match the blood and kidney function test results.
None the less, my wife and I are trying to adjust to the new reality of possible changes in our life every three months when each new blood test could either show a trend or tip me over into treatment.
I am hopeful when I read people’s stories of smouldering for longer periods of years vs months. I honestly don’t know what to expect so any war stories would be appreciated. What symptoms appeared first. What could you identify with hindsight with little weird feelings in your body that later turned into areas of concern. Also, what is it like to work with this disease. I am in the technology industry so a lot of my work can be done from anywhere as long as I have a laptop and internet.
I wish you all the best health and happiness,
Jordan
