Hi!
I just found this post, I know it’s an older one but thought I’d hop in here anyway & hopefully someone will respond back.
I was diagnosed with MGUS about 30yrs ago. Nobody seemed to know much about it & I pretty much figured I’d be dead by now.
It was terrifying. I still had 2 kids at home & so I made my arrangements for after I passed. I was in my late 30’s. Most of the Drs were wrong about what was happening in my blood. And no one could tell me why I kept getting DVT’s. Finally after my last clot in my IVC in 2016 I saved some money & went to Mayo.
I finally found Drs who could tell me exactly what was going on. Absolutely incredible! I even had a BMB. I had refused one for many years because I didn’t trust anyone.
I’m at 5% myeloma cells & was told they don’t treat unless you’re at 6%.
And then of course COVID hit, I lost my mom, family moved, I moved….just life in general happened.
Recently tho my blood tests from my GP have shown a few changes.
I don’t know if it means anything or not but I feel like I’ve been very fortunate to have lived with MGUS for so long & will probably continue living with it without it turning into MM.
I’m also thinking about joining a clinical trial if it would help understand this disorder for others & possibly even take away the chance of it ever progressing.
Has anyone on here ever been part of a trial?
Thanks for listening & I wish all the best!