Hi everyone, I hope you don’t mind me posting here as I have only been diagnosed with MGUS. The trouble is I have not managed to speak to one person who has ever heard of it, which actually makes it all a bit surreal. I went to my GP in August for a follow up appointment after being discharged by a Private Consultant after having Hepatitis CMV. My GP went on to read a letter from the Consultant to me, which he hadn’t read before that moment. The last paragraph stating that due to Paraprotein being found in my blood this indicates that I am suffering from MGUS and should be tested again in 6 months. Well my GP just said that he didn’t know what it was and googled to find out what bloods he should be checking for in January. Can’t say this gave me a lot of faith in his abilities to treat me.
In the meantime I had to have follow up bloods for the CMV which have indicated my red blood cells have risen to 104, they should be a maximum of 102 which isn’t a huge amount over but historically my red cell count has always been 96. At this point my GP I believe, was quite relieved to say I think we will refer you to a Haematologist, so that he would no longer feel responsible for me. So at this moment I know nothing else, (the GP was never sent the paraprotein level) I’m just waiting for an appointment at the Spire Hospital in Norwich. Does anyone else have appointments in this area. I’m just hoping I don’t end up having to travel further afield.
Can just a paraprotein level diagnose MGUS or would other info be required? My GP doesn’t know but he said he would imagine the consultant would have considered this before stating that I had it.
Thank you for letting me ramble, hopefully I will get an appointment any day now. Be nice to eventually talk to someone that hopefully will have heard of it.
