Good evening to everyone. I am new. Not new to Monoclonal gammopathy of unknown significance (MGUS) as I was diagnosed in December 2021. I had not seen a he otologist oncologist until recently though. I was referred back in 2021 but with Covid my regional centre only saw patients they felt were at high risk. My rheumatologist felt that at this time a visit was in order. I saw my specialist and had labs done. Later he called with a follow up. My kappa light chains had gone up as well as the kappa lambda ratio. He felt there was nothing at this point to be concerned about. I have been feeling pretty awful though. The fatigue is just indescribable. It has changed who I am. I am normally a very interested person but I am so tired I just can’t be interested. I have never spent so much time resting or outright sleeping in the daytime. I am 63. It is affecting my mood at this point as well as I have had to let go of allot of things that make me happy at least for now. My doctor said he wants me to see him in six months and redo the labs. That if they continue to rise perhaps there may need to be some kind of treatment. The problem is I don’t know anything about Monoclonal gammopathy of unknown significance (MGUS) or blood cancer. When do symptoms first happen? Is there a magic number to experience symptoms or for treatment? How high do the labs have to be before they affect how we feel? Thanks, Teddy.
Hi @Teddy, I’m so sorry you’re feeling so drained and unlike yourself - that kind of bone-deep fatigue can colour absolutely everything, and it’s understandable (and relateable for many of us) that it’s affecting your mood and the things you normally enjoy.
I realise you’ve received some great responses on other posts of yours related to this, so I won’t add anything to what’s already been said, but I did just want to reiterate that if you’d find it helpful to talk things through, our Blood Cancer UK Support Line nurses are brilliant at helping people make sense of Monoclonal gammopathy of unknown significance (MGUS) and think about what to ask at appointments. You are more than welcome to give them a call on 0808 2080 888.
And just in case you haven’t come across it yet, the ‘Related Topics’ section at the bottom of this page often pulls up other Monoclonal gammopathy of unknown significance (MGUS) discussions that people find reassuring or useful.
Keep reading and reaching out on the Forum - you’re not on your own with this.
Take care,
Ceri - Blood Cancer UK Support Services Team