MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

Hi! I’ve been diagnosed with having hemosiderosis of the spleen, hemochromatosis and a paraprotein in my blood. I recently had blood work done which showed, my light chain Kappa high and my quantitative free light chain kappa/lambda ratio was high, but the IFE showed no bands of restricted mobility (paraprotein). Indication: Monoclonal Gammopathy. I have kidney issues as Gfr goes down to 27 at it’s lowest and goes back up, never making it to 60, closest is 54. I have back pain, rib pain along with hip pain. I also have extreme exhaustion, which I start out tired and than it just hits me that I feel so exhausted that I can’t hardly walk, breathing isn’t good but I have a lot of edema with I take 100 milligrams of torsemide which helps. My oncologist/ hematologist says there’s nothing to worry about, but we never go over test results as he says he reviewed them and they are good and he’ll see me in six months. I wanna believe that, so I’m assuming if the ratio is high but IFE shows no bands of restricted mobility that it means normal. It’s just so confusing when you go to your doctor and he has allotted 10 mins for our visit so he’s in and out, but he’s the expert and I’m sure his other patients may have more important health issues. Can anyone who’s experienced my symptoms offer any encouraging words that will put my mind at ease. I trust my doctor or I did in the beginning of my journey but still sometimes we just need a encouraging boost! Thanks for letting me rant. Sometimes you just have to let it out!

I love your positive outlook. Thank you for sharing!!

What caring lovely words. You’ve put a smile on my face. Thank you 💜

I absolutely agree with you. I could not have said it any better myself. ♡

@robinrossrn @amossarah It's easy to do the Dr. Google thing, and read many negative statements, from many different sources, that are not always scientific or credible. And it's also very easy to "awfulize" everything. We learn to be aware, to take care of ourselves as best we can. Take each level, each appointment, each discovery, and fit it into our lives. What one person experiences, another may not. We may have other health issues, also, that play into the picture. So glad we are here as a group, to share and support each other.
Ginger

Hi, it might be your levels aren’t too concerning yet to do them. Not that I would know.
I’ve read they do urine samples in America. Apparently here in NZ they don’t anymore.
Keep your chin up and keep everyone posted : ))

No I've had none of those yet. I just had my 60th birthday and won the title of Mrs. Classic Universe. I was having a pretty epic year. I wasn't too concerned until I saw my light chain levels. I honestly think I'm just odd. I am quite anxious to hear what he has to say. I'm trying to stay positive but I honestly just have no idea what to think. Praying for the best. I have so much left to do ♡

Haha yes and I’d probably say the same ish thing if it was someone else!!!!
That’s incredible you beat colon cancer. If you can beat that you can keep this at bay. You’ve inspired me! There is hope!
I am angry too, absolutely pissed off in fact!! I’ve just turned 50 and thought I was fit and healthy, i exercise and eat well. I don’t have a faith but I do believe our minds can do incredible things..
Have you had any scans, or a bone marrow biopsy yet?

They ALWAYS say don't worry because it's NOT THEM!!! He also hadn't seen my follow-up bloodwork. I live my life with my glass half full all the time. 20 years ago I was dx with stage III colon cancer and I knew I would beat that, I DID. This just came out of nowhere, no connection! I'm just so disappointed and angry. It's like lightening striking twice but for no good reason. Anyway, thanks for your very kind words. I can tell you this much, staying positive and prayer are very important. God does listen ❤️

Hi Robin,
Yes I am exactly like you! I have no symptoms. Slight back ache, which goes with exercise. My liver and kidney function are also perfect. The reason I got tested is because we found out just before Mum died this February at 83, she had multiple MM.
I am two weeks in. Very scared, struggling to sleep and having full on panic attacks!!! I am waiting to see the haematologist- 3 weeks to go! They have suggested it could be smouldering myeloma. I’m being told from the few friends and family I have told to keep positive as it might only be MGUS. I feel like screaming is that all!! I’ve just watched my mother die and now realise why she had all these complications!!! But I suppose though 83 isn’t a bad age!
it is really good that Your haematologist says not to worry. I know that’s not much, but it is a little bit of hope. Keep doing what you’re doing if you’re healthy in every other way.
Sending a huge hug X