Hi Lacey,

Yes indeed MGUS is the better outcome.Thats exactly what the Haematologist said when my diagnosis came back in 2014. However now I know that although I have asymptomatic myeloma I need to stay at this stage as long as possible. It just messes with my head sometimes but it is not at the forefront of my mind now as it was a few months…[Read more]

Hi Lacey,

Many thanks for your kind comments.

I remember well how scary it was to be having all the different tests and then waiting for the results. It’s very difficult to think about anything else and carry on doing normal everyday things so I really do sympathize with you and your husband. In a way you will feel better once you know and then…[Read more]

Hi Barry,

My first consultation with Myeloma nurse since my diagnosis went well. My bloods have remained stable and my paraproteins unchanged so that was a relief. Have to go back in 3 months. I am grateful that I am being monitored so vigilantly.

Take care

Regards

Yvonne

Hi Barry,

Many thanks for your positive comments. It’s now 3 months since I was diagnosed and I am definitely having days where it’s not at the forefront of my mind. I think I am dealing with it a little better now. As it happens I had my latest blood tests last week and am due back at the hospital this afternoon for the results so I am a little…[Read more]

Hi Mike

Thank you for your message and words of advice. I am still trying to come to terms with the diagnosis of smouldering myeloma. I had perhaps got a little blasé when I was Mgus as I had read that people can live all their lives with Mgus without progression and I assumed that would be me. So I have to re-adjust my mindset I suppose and…[Read more]

Hi Rachel,

My bone marrow biopsies have showed that I have now progressed from MGUS to smouldering myeloma. I really did not expect that.I thought I would be MGUS forever. My consultant says that because I am a younger patient ( I’m 56 ) it will be very likely that I will need treatment at some point.

I don’t quite know how I feel at the moment.…[Read more]

Hi Rachel

I usually have a flu jab although I always had one anyway as I worked for NHS so was advised to have one.

I am a little apprehensive about my hospital appointment this afternoon I must admit but at least my consultant is being very thorough by getting me to have all the tests again. I am trying to stay positive that the bone pain is…[Read more]

Hi Rachel

I usually have a flu jab although I always had one anyway as I worked for NHS so was advised to have one.

I am a little apprehensive about my hospital appointment this afternoon I must admit but at least my consultant is being very thorough by getting me to have all the tests again. I am trying to stay positive that the bone pain is…[Read more]

I was diagnosed with MGUS over 3 years ago. My paraprotein level fluctuates between 11 and 13 . In last couple of months I have been experiencing awful bone pain in my back/pelvis and arms and legs and dreadful night sweats so my consultant has got me to have all the tests again…. bloods, PET scan & bone marrow biopsies. I am due to see her on…[Read more]

Hi Rachel,

Many thanks for your welcome.

I haven’t logged in for some time since diagnosed with MGUS 3 years ago. I have sort of just got on with things as it were and had my blood tests every 3 to 4 months. I am still followed up by the Myeloma nurses who let me know my results by phone but can contact them if I have any worries.

I do have…[Read more]

I was diagnosed with MGUS just over 3 years ago after seeing my GP for what felt like “growing pains” in my arms and legs. I was referred on 2week wait and after many tests including bone marrow biopsy to have IgA Lambda. My level when referred was 11 and this increased to 13 by time I saw Haematology. Consultant. I have had regular monitoring by…[Read more]

Hi Sue,

What a lovely picture. It must be so difficult for you and my heart goes out to you. You must miss him so much. It sounds like he really put up a fight against MM. I hope you have had good support from family & friends. The Myeloma nurse told me this was the best UK site to go to for info and support. I just joined the Forum earlier this…[Read more]

Dear Sue,

I really feel for you. It is so sad to lose your soul mate like that. I am really grateful to the NHS for the care and monitoring it is giving me. I had never heard of Myeloma and I have worked in a gp surgery for almost 17 years. My gp had to tell me what it was when he rang me re my abnormal blood results. The doctors I work for said…[Read more]

Hi Sue

So sorry for you on loss of your husband. From the symptoms you’ve described he may well have had Mgus. I think all Myelomastarts with an Mgus but everyone with Mgus doesn’t always get Myeloma. That’s how my Haematologist described it to me. Its a 2-edged sword knowing I have Mgus. Its too in that I am being monitored regularly with blood…[Read more]

Blood tests all stable. Paraprotein stayed same as last time. All good news. I thought that I would be discharged as that is what normally happens after a year of stable blood tests but Haematologist says she wants to keep an eye on me still so back at beginning of August. Could have been worse but at least can go on my holiday on Monday and…[Read more]

Hi C

Many thanks for your reply. Its just that time again when blood tests results are imminent. It will be a year since I was first diagnosed as mgus / borderline Myeloma. If I’m stable still then I think I am passed to the Myeloma Nurse who will monitor me. I have had some bone pain but my MRI was all clear. I have noticed in the past 8months…[Read more]

Hi

I know this is a daft question but when you went from Mgus to Myeloma had you any symptoms that indicated you had progressed or was it just based purely on your regular blood test results? I’ve noticed that some people had no symptoms but positive blood tests …….

Regards

Yvonne