Hi Loulou.
To my untutored mind I would have thought that corneal involvement is unusual and indeed so is the fact that they discovered it at such a young age. The rule is that myeloma can affect any organ except the brain, but even though the normal route of affecting the bone is bad enough, the possibility of it affecting the eyes would concern a lot of people. Normally you wouldn’t be checked for myeloma at that age, so I presume they discovered it in the corneas after you had symptoms and they worked their way back to make the diagnosis.
It does seem a little strange to have conceded organ involvement and still restrict the diagnosis to MGUS. It doesn’t seem logical to be producing m-proteins to a level affecting an organ enough to require treatment and then downplay it, but I’m no expert. I am at the MGUS stage and recently the Consultant appeared to be writing my obituary, and it took me a few weeks to work out why. It seems that I may be dying of something else, they don’t know what, but my MGUS is fine. Myeloma can be a challenge even for the experts and sometimes we expect too much, not to say we shouldn’t be inquisitive about our results and what they are.
The base line test is the measurement of m-proteins but you may have none at all but elevated levels of free light chains. They will also be noted on your blood results and the kappa/lambda ratio is a prognostic guide, so the textbooks say. If it falls outside the normal range it is not good, but mine has always been that way on the other side. With this illness it will often overproduce one type of kappa or lambda flc’s in excess and when the ratio is outside normal limits it shows this. I always note my free light chain level as well as myeloma proteins when I have my blood tested. I also get the kappa/lambda ratio though I know that will never be within normal limits and my eGFR which is a measure of kidney function.
