Starting mgus journey

Posted by orla @orla, 2 hours ago

Hi all, I am very new my first post. My journey started going for regular coughs and uti’s. I was exhausted. GP phoned said all blood work was ok with exception of one which she wouldn’t elaborate on. 6 months later I received Referral to see a haematologist. Didn’t think much of it. Got bloods done again protein levels were high but consultant was making me feel this isn’t a concern and I couldnt worry and should forget about it but just to be sure test again in a year. This time a different blood test was carried out Spep . When I went back consultant said needs to be brought back in 6 months. Then I receive a referral to see a multiple myeloma specialist which scared me . Apparently I am being streamlined. I emailed to query and consultant phoned me to say obviously having mgus .. this was first I had heard of this . The list of blood work ordered made me feel like this is now something I do need to take stock of. I had the light chain, spep , fbc, renal and liver bloods done today to see consultant next week. It’s scary but I know I will have to face this the rest if my life. I am lucky could be worse but it feels lonely like you shouldn’t make a big deal do I haven’t talked about it much !! I have in an off bone pain in feet back and hip. This could be down to being menopausal at 45. I’m trying to keep positive as I have two young boys . It does make you take stock!! It does feel like a limbo disease!!

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