Hi @nick86, sorry to hear you have MGUS at a young age. The benefit to finding it early is being able to watch it periodically to see if it’s doing anything sinister or just being the relatively inert aberration that it is.
When I was told I had MGUS I didn’t really know too much about the sub-types so I spent as much time as I needed researching through academic and research databases, reviewing the scientific literature (research papers), to determine what was the best and most high quality information to learn from. Some I undertook critical appraisals of their findings to ensure the data presented was robust. This sorted the wheat from the chaff, as some above have already mentioned when discussing sources that may be not as accurate as others. Yes, there is some contradicting information out there, however I find if you dive in to sifting through the actual research (instead of having to take into account weakly evidenced editorials, inaccurate interpretations, and incomplete and unreferenced junk) then there’s an abundance of accurate info that helps with gaining clarity relatively easily.
When I got MGUS this process took me all of around 1 week of a couple of hours each day (I think I read around 40 curated papers that week, and that was easily enough to get a firm handle on what it’s all about).
Now, in Au I provide a little list of helpful accurate resources for people who contact me with their specific results. Apparently it’s working for them too.
I find avoiding information just perpetuates fear. Actively finding accurate info gives power in knowledge.
For instance, the blanket claim of progression at 1-2%/annum doesn’t fit all types/risk stratifications, and because I did appropriate and robust review of the literature, I provided my reasoning to a new haematologist along with my new test results, and she has found I’m zooming along from MGUS to SMM in ways she’s “never seen before”. But, this wouldn’t have been possible to discover without extensive knowledge building, evidence gathering (both in specific tests and in comprehensive scientific data review), and objective presentation to my new doc.
I was Dx’d two years ago with MGUS at 47 years old, and have had MGRenalS for at least the last 7 months, with another BMB on 9th November where they expect SMM (based on current Mspike). I’m not convinced, and I think it’s a simple case of amyloidosis based on lambda light chains being heavier - and thus more damaging per volume - in molecular weight than kappa (kappa/lambda ratio is below range, lambda level above range). We’ll see who is right once the BMB comes back. Due to the chronic kidney disease (commenced 7 months ago) they’re doing a kidney biopsy as well.
Treatment? Well, that’s apparently chemo anyway, so they say, to treat light chain disease.
Not to worry - I have learned much of what the doctors use to base their knowledge on (I’m a former lecturer of anatomy and have a 9 year history of education in health sciences), and have zero concern for what I may be facing in terms of Dx and Tx.
I know this can be fear inducing for some people, however in my case, I have followed the usual path of objective learning, sifting the rubbish out, and using evidence building to determine facts.
And this isn’t the worst thing to happen to me in any way (on the scale of horrid stuff I’ve been through, this is only about a 3/10, so I guess that helps too, in terms of the fear/distress factor not even rippling the pond).
All the best, and finding objective, reliable fact is helpful in allaying concerns, is the best I can say.