Hi
I have recently been diagnosed with Monoclonal gammopathy of unknown significance (MGUS). It took months to work out what it was that was wrong with me. Is this site somewhere that I can get advice if needed please
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Hi @Corrie welcome to our forum.
Other forum members might well share their experiences for you, but if you need medical advice we might well refer you to your medical team as they know you and your whole medical history etc.
There is a lot of information on the Blood Cancer UK website and Blood Cancer UK does have a support line on 0808 2080 888 and they also have nurses on that line.
I think the value of our forum is that I can be really honest on here how it is for me and often I find it does not matter which blood cancer we have we often share very similar fears, thoughts, emotions and practicalities.
How are you feeling and doing, I found I felt very isolated out there.
Please do keep posting as I look forward to hearing more about you
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Thank you. Look forward to hearing from others with their experiences. I agree you do feel isolated.
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Hi @Corrie I hope others will share their experiences with you.
For me this forum stops me feeling isolated, in life I have never found anybody with my Chronic lymphocytic leukaemia (CLL), apart from at the hospital.
I often wear a Blood Cancer tee shirt in the summer and I have been stopped with people sharing how they have been affected by blood cancer, I am a walking bill board.
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Hello there @Corrie, welcome to the forum! I’m really sorry to read of your diagnosis, but perhaps it’s best that you know now so you can work out the best way to live with Monoclonal gammopathy of unknown significance (MGUS). You’re absolutely in the right place to seek advice about Monoclonal gammopathy of unknown significance (MGUS), I’ve seen many forum members like yourself raise it here.
While I have a different blood disorder, Polycythaemia vera (PV), others who live with Monoclonal gammopathy of unknown significance (MGUS) will be able to offer better advice. However, Blood Cancer UK has some great information about Monoclonal gammopathy of unknown significance (MGUS) that you might find helpful: MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
Another thing you can do is search around the forum for others mentioning Monoclonal gammopathy of unknown significance (MGUS) by typing it into the “search the forum” box at the top. And like @Erica mentions, you can always call the support line where you’ll get through to a lovely nurse, many of whom will also pop onto the forum to answer our queries and share their expertise.
Hope this helps! Do please keep us posted about how you get on.
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Hi Corrie,
I’ve been recently diagnosed as well. I am still waiting for lab results and I will have to have bone marrow testing in the next couple of weeks.
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