MGUS and recent test.

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So I was diagnosed with MGUS around two years ago. Terrifying to say the least when it was picked up totally unexpectedly at the grand age of 37. 

Since then my white blood cell and urea levels have increased steadily yet the paraprotein stayed fairly stable. 

However my last blood test has freaked me out as my white bloody cell count has jumped nearly 50% since the last test in June and being as it is, I can’t get an appointment to talk to the GP or a nurse. 

Am I worrying over nothing?

  • Hi Bigjim and welcome to the forum.

    Obviously, this forum is for lay people like me and not for medical professionals (so please bear that in mind in what I am about to say). That could be why no one has replied to you until now.

    From my reading up, there are two alternative explanations as to why your WBC count has shot up.

    - An infection. This would be nothing to do with MGUS. Although you would probably have symptoms, that is not guaranteed. For example, Covid infections can be symptomless.

    - Yes, it could be myeloma (or something similar). I can't sugarcoat that. What I can say is that although 37 would be horribly young, it would give you an advantage over us old codgers in terms of your body's likely ability to fight it, with help from chemotherapy. Your prospects would therefore be unusually good. Treatments can already put people into remission for decades, and that is constantly improving further. Just last night, I was reading about a new clinical trial called MajesTEC-3 where patients have responded so well that leading doctors in the field are saying "Wow"!

    In terms of symptoms of myeloma, the classic signs are CRAB:

    - HyperCalcaemia (high levels of calcium in the blood)

    - Renal failure (kidneys stop working)

    - Anaemia (signs of that would typically include tiredness).

    - Bone pain.

    Not everyone gets all of these: I still don't have bone pain 3 years after diagnosis.

    All the best, Bigjim. Please let us know how you get on.

  • Sorry for the delay but thank you for your reply. I managed to get an appointment in a couple of weeks with the Nurse practitioner who has dealt with me since diagnosis. So will sit down and talk with her. 

    I have suffered greatly with fatigue for a number of years with no reason ever found, 

    My platelets dropped low when I was diagnosed with Mgus. Picked up to just above the low threshold when tested again. I am now 39, 40 next year. Was 37 when diagnosed. Still rare to be diagnosed this young from what I was told. I’ve also been feeling the cold a lot more in the last few years. Even my wife who was the cold one has said it often that she finds it odd as normally I’m warm. 

    like I say, hopefully nothing to be worried about.