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Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I have recently been diagnosed with MGUS and would like to meet other people online to hear/learn about their experiences.
Welcome to the forum, although I’m really sorry to read about your recent diagnosis.
I must have had MGUS but didn’t know it and was diagnosed with myeloma a few years ago. I’m not sure if we have any existing MGUS patients on the forum at the moment, but hopefully someone will be along soon with some experience.
I’m really hoping the MGUS doesn’t develop into myeloma - from memory I think it is 1 in 100 who do, so am really hoping you don’t. What have your medical team said to you? Are you on watch and wait for the time being?
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I received my MGUS diagnosis a week ago and feel like my life as I know it is over I was also told I have osteoporosis three months earlier. Please anyone who can help me come to terms with all of this would love to hear from you. Thank you in advance.
I have had MGUS for around 11 years now. I've had skeletal surveys, bone marrow biopsies, xrays, scans and many, many blood tests. My life has not changed at all. I have regular 4 - 6 monthly hospital appointments and so far all is well. Occasionally, I have a spike in my paraprotein levels but it usually rights itself. I feel safe in the knowledge that I'm being looked after and I don't dwell on it.
Thank you debbie for the encouraging post, I was diagnosed last October and still trying to come to terms with the condition, at the moment it's three monthly blood tests which is due next month and really don't know what to do, cancel due to the virus or go to the surgery. The anxiety that I have experienced these past few months has been bad and these uncertain times isn't helping at all. I wish I could be like debbie 1962 and not dwell on the condition but I do!
My blood tests used to be 3 monthly, then mostly 6 monthly. Sometimes they do extra if I've had a spike in paraprotein, but it usually settles. Try not to worry too much (easy to say!). I spoke to my consultant and she said my immune system was absolutely fine based on my January blood test.
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