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]

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]

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

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]

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]

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]

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 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]

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]

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]

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]

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]

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]

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

I’m pleased you got through your tests okay. Now its just the waiting. I was at work every day so that kept my mind off things most of the time but its hard not to worry. I do know how you’re feeling as this time last year I was having to deal with the same. Now a year later I’m still stable. I have more blood tests tomorrow and back at…[Read more]

Many thanks for your advice. It is appreciated. I am due blood tests again next week and see my Haematologist on 13th May for my latest results. It is 1 year since I was first diagnosed with Mgus / borderline Myeloma and I’m in a routine now with what to expect. If the results are stable I’m expecting to probably just see the Myeloma…[Read more]

Just got to go with the flow…..

Thanks for your input

Yvonne

Many thanks for your advice. I am due more bts in a couple of weeks again and seeing haematologist 13th May. Which blood tests do you normally ask for? I usually have fbc, u&e, calcium and Immunoglobulin. I am having the Serum free light chains as well this time. It has been a difficult couple of months because I have been having bone…[Read more]

I know you’ll feel nervous …..everyone I have spoken to does.  Hopefully you won’ t have to wait too long so you can get the tests over with. Take someone with you if it helps. You’re no chicken I’m sure. Let me know how you go on.

Take care

Best wishes

Yvonne

I was diagnosed with Mgus IgA / borderline Myeloma in may 2014. I had been to my gp because I had like growing pains in my legs and tingling in my feet and hands. I had several bts including Immunoglobulin which came back abnormal. My gp rang me and said my tests were indicating I could have Myeloma so he did a 2week referral…[Read more]

I just want to know what’s happening with my results …..if things are staying stable or getting worse. I am borderline Myeloma and just so I can deal with this mentally I want to be aware of all the facts not just a select few. I am sure you understand that it can be difficult living on this knife edge all the time. I am still…[Read more]

Thanks for replying. I am seeing a Haematologist at Nottingham City Hospital. I am usually in and out of appointment in about 10 minutes with just a quick consultation of what my paraprotein has done . I know that there isn’t a lot to be said when you just have Mgus but I do want to have some form of control if possible even if its only…[Read more]

Thank you for your reply. When I go back mid May for my results I will ask. Obviously its easy to read information on the internet but without all the facts and figures I don’t know what is relevant to me specifically. I want to be informed about my situation without being paranoid if you know what I mean.  Its me that is having to…[Read more]

<span style=”font-size: 13px; line-height: 19px;”>Does your hospital generally give you all your blood results easily or do you have to prise it out of them? I have been diagnosed as Mgus/ borderline Myeloma since last May and all my consultant will ever give me is my Paraprotein which is 11 at the moment. I generally visit hospital every 10…[Read more]

Glad you got your results at last !! Its not good you had to wait that long as the mental stress is hell. Its reassuring for you though its still not easy. I had my appt with Haematologist last Weds. My paraprotein had crept up again slightly and because I told her of bone pain in my arms, legs & ribs she sent me to have more xrays…[Read more]

Many thanks for your reply. These bone pains are definitely not normal aches and pains. The pain in my femur and arm / shoulder take my breath away at times and have had many sleepless nights with it. I’ve not heard anything yet….but if they say not Myeloma related then I may follow your lead and request another opinion. Just shows…[Read more]

It is really difficult Helen. I have been going to hospital every 10 weeks but you’re right….. we’re living our lives in these blocks of time. Its no joke. It is really hard to be “normal”. We are on this rollercoaster though and we can’t get off it so we’ll just have to hang on in there……

Take care xx

I am new to this site and know just how you feel. I was diagnosed with MGUS last May and have had regular blood tests since and been reviewed by Haematologist regularly. My initial IgA level when found last May was 11 which went up to 13 by time I’d had my bone marrow biopsies, etc. It then went down to 12 then 10 but had gone back up to…[Read more]

Take care…..love & hugs

Yvonne xx

Thank you for your comments which I can relate to totally. Its very difficult some days to carry on as normal with all the worries going round in your head. We’ll just have to go with it and hope for the best. We’ll give each other as much moral support as possible. I already feel better for talking to you & Helen.

Many…[Read more]

Thank you for your reply. The Myeloma nurse that I was referred to at hospital downloaded an information sheet from this site and said it was the best one to go to for up to date information. I haven’t really discussed any of this with anyone in my family really either…..just Steve & my 2 sons and daughters-in-law and that’s just the…[Read more]