Hi Everyone,
I have recently been diagnosed with IgA Kappa Monoclonal gammopathy of unknown significance (MGUS). Paraprotein Band 1 level 3.1, IgA 5.33, Kappa 26.16, eGFR 79.
I saw my gastroenterologist on Tuesday who gave me this information. However, neither he or my GP are able to give me any further information other than “its nothing to worry about”.
I just want to know if my type is low or high risk and what numbers on bloods would be concerning?
Thank you.
Iawn @welshlady, welcome to the forum. I’m sorry you had reason to find it and comment, but I’m glad you did.
While I have a different diagnosis to Monoclonal gammopathy of unknown significance (MGUS) (of Polycythaemia vera (PV)), I think our concerns and anxieties can be similar after such difficult news. However, there are many forum members diagnosed with Monoclonal gammopathy of unknown significance (MGUS) who know what you’re living with and what those blood cell numbers you shared could mean, so have a look around and see if their posts are helpful at this worrying time.
I wonder, did your doctors say anything about a referral to a haematologist or doctor who specialises in blood disorders? I’d be tempted to ask for further information at least and preferably a referral to an expert via your GP. Although you’re not alone in being diagnosed with a blood disorder by a specialist other than a haematologist, it might help if you got to see one who can allay any worries you might have with their specialist knowledge.
If you don’t get to speak to someone with more relevant experience/tact than your current doctors then you can seek support via PALS (Patient Advice and Liaison Service): What is PALS (Patient Advice and Liaison Service)? - NHS
Depending on where you are the availability of specialists will vary. My dad is in Wales and he got checked out after my diagnosis and his various blood test samples were sent to Cardiff University Hospital and it took months… Some waiting is likely so try to find ways to distract yourself healthfully, I say.
I’d say be mindful of what information you read online and try to stick to official blood cancer research like here as there’s a lot of outdated, inaccurate information dotted about on the internet. You might find this Blood Cancer UK information about Monoclonal gammopathy of unknown significance (MGUS) helpful: MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
Hope this helps, @welshlady. Iechyd da!
Thank you so much for your helpful reply!
Gastro on Tuesday (after much probing) eventually said they would ask for an opinion from haematology. Whether that means referring me to see them, I don’t know. Will sit tight for a couple of weeks and see if I hear anything. If not I will chase with the gastro team. My local hospital is UHW (I also work there!) so I totally get the delays unfortunately.
You’re more than welcome @welshlady! Sounds like you’re on it already and seeking clarity from the right people. I’ll keep my fingers crossed you get all your queries answered.
Something that can be helpful at this early stage after diagnosis is to write it all down, all the stuff that’s going round your head, worries and worst-case scenarios and so on, and then when you come to speak to a specialist they’ll be able to answer or at least bring a little clarity.
Let us know how it goes! Don’t hesitate to run anything you’re wondering about past the forum, you’ll be sure to find folks here who can reply with first-hand wisdom.
Hi @welshlady I see @Duncan has welcomed you and given you a lot of information.
I would like to welcome you too.
I was also diagnosed by another department, Gynaecology, and it makes it very confusing, however I have another blood cancer.
Let’s hope you get the answers you want and your referral.
We are here for you as @Duncan says.
Really look after yourself and please do keep posting as I look forward to hearing more about you.
Hi,
I see you were also recently diagnosed. I was diagnosed on Friday (30/8). I know it’s IgA, but I don’t know the numbers yet. I am waiting for the Kappa lambda ratio results to come back.