MGUS - help, advice and just a chat

Hi there I hope you are keeping ok and wanted to write to you I got diagnosed with mgus 5 yrs ago it got found out because my former work colleagues spoke with my boss about me sleeping on all my breaks and then I slept in one morning and they were concerned because it was out of character of me so boss told me to c gp and ended up getting called for bloods every couple months for a year before the gp told me I had mgus and started my journey with hemotolgy I am also covered with arthritis and have bone pain bad enough I am morphine and 4 months hemotolgy put me on oromorph because of pain I am in now and got bone diopsy done went back 4 weeks later and head of hemotolgy seen me (hadn’t seen him in awhile) told me my light chain is high  and my paraprotien level is rising as well then told me I am in myeloma now but at that time I did not need treatment as don’t show any other signs and see him on 25/4 and my family said I need to tell him I get exchausted very easy washing dishes walking around Morrisons ect sleep at drop of hat and have lost a stone in 5 weeks without trying to lose weight 

but one think consultant told at last appointment he said you can go into myeloma but some people don’t need treatment and might never which I hope is the way to happens to both of us 

always write down how u feel ie tiredness weight loss ect and when u noticed it so u can let them know 

I understand how u feel as it’s so donting not knowing what’s going on 

I speak to Mc Millan at my local library my try find out about where they are in your local area as they are great to chat with too and support and can chat with u to on hear if u like 

Thanks Puggsy. Sounds tough, hope you're doing ok. I think I do need to start a diary, just trying to ignore it at the moment .. kind of difficult really. Had orthopaedics yesterday, got another appointment next week, and haematology on 25 April. Pretty full on, but I know others have it worse. You take care.

Hi there I know it’s hard going and I know it’s easier said that done trying to keep ur chin up

my hemotolgy appointment same day as u let me know how u get on 

take care thinking of you xxx