MGUS and asymptomatic/ smouldering. lucky yet feeling lost!

Hi’ to all and hoping that this post simply creates an area of discussion for those who by want of a definition are fortunate not to have progressed but may still at times feel lost/ forgotten. This latter is always brought about when I read or hear that MGUS or Smouldering is “asymptomatic”. I feel that this medical opinion is possibly one that is not wholly supported especially by those diagnosed with either condition and feel that they suffer with symptoms related to their differing diagnosis. This is not an argument for wishing for what is termed an early intervention but simply a recognition of possibly related symptoms.

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Thank you @Shaka, it is definitely a positive discussion and you make such valid points and I am not surprised you often feel lost and forgotten. When you think there are at least 137 types of blood cancer, many with similar symptoms and there are also other conditions with similar symptoms as well it not easy. You can always contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk if you need support.I would be interested to hear what it is really like to be you at the moment.

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It was nice to see this post. I had just been diagnosed with mgus iga kappa in Jan after a bit of whirlwind couple of months from 1st haematology apt in nov to bmb in December and skeletal survey beginning of Jan. I’d naively though I been referred due to persistently increased esr and crp levels after being diagnosed with high blood pressure and a few months of current infection and pain and fatigue for a couple years I’d felt were due to severe stress after a difficult marriage breakdown. I thought I’d be told to lose weight and exercise more. I didn’t realise the significance of an m spike being found and the referral to haematology in the first place.
So I’d barely for my head round my diagnosis itself and process living in this new way when the pandemic started and I felt completely lost with this diagnosis which being so ill had led to be found but then being told it’s symptomless and nothing to worry about.
Then it’s not the cause of my fatigue pain inflammation recurrent infections then and we should keep looking? And am I more vulnerable in my frontline job performing high risk procedures on a trache patient daily … or not?
I had the fear and also the feeling of how lucky I was to have mgus too and nothing worse. It’s a very confusing condition. Forget about it and live your life but … play close attention and be monitored regularly just incase you’re in the 1%.
There’s no questions here or answers needed just how I’ve been feeling.

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Thanks so much for posting and you describe this year and what it has been like for you so clearly. I personally do not think you can underestimate the shock of being diagnosed and how long it takes to get our heads around it and then everything that has happened to you as well, plus the Covid-19. You seem to have lots of questions going round in your head which are perhaps for someone in your medical team. Have you got any support from family and friends because you have had so much to get your head round and I know I can feel very isolated sometimes. We are all here to support you and the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk and also there if you need them.

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Thank you. I’ve good family and friends but find it difficult to discuss mgus with them. It’s like this non diagnosis. A quick search shows a symptomatic. Rarely progresses. Found accidentally.
And yet the reality of having this will it won’t it diagnosis is confusing. I don’t want to alarm myself or anyone else as I know it may never be anything …// But and that’s just it with this there is a potential but lurking somewhere maybe.
I spoke to My trusts occ health who didn’t know enough to make a call and referred me to my gp who said due to my age 41 and v recent diagnosis and how very little is knows and also the fact I have high BP he’s err of side of caution and bring me out of work at least until my next bloods in July.
I’ve since been referred by my boss to occ health due to length of absence who have now access to my medical records And lab results and permission to contact haematologist in same hospital for advice and I’m awaiting to hear from them. I’d be happy to work if I’m no worse off than anyone else.
I’m fine really just was so glad to see a post understanding the difficulty of this diagnosis and I feel awful complaining because I realise as well I’m lucky it’s mgus :see_no_evil:

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You are certainly not complaining and I have another blood cancer and I really remember not being able to explain to family , friends and work what I didn’t really understand myself. My logic was that I would be diagnosed, have treatment or an operation and I would be cured. I now realise many blood cancers are just not like that. I felt a fraud and I still do now when I hear of others that appear so much worse off than me. For me it is that feeling of living with a timebomb inside me and I get anxious, before during and after all medical appointments or if I get any symptoms of any sort. I have a common blood cancer and it must be so much more difficult with a rare one. Your safety is the most important thing. Please let us know what occ health say?

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I will do. Thank you so much. It’s lovely just for someone to understand the ramblings

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Hi @Jenwren_78 how have you been since your last post?

I echo Erica’s words, in no way are you complaining, your concerns and worries are just as valid as any other one of our forum members. And it is really good that you feel you can be open and honest on here, this is something we strongly encourage.

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I cannot pretend to understand what you are going through, as you are alright…but not alright. I am pleased that your GP has exercised caution and that your welfare is high priority at work during these uncertain times. Stay safe, and let us know how you get on

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Thank you I’m ok. I really appreciate the kind comments. I expect I’ll hear from occupational health someone this week and I’m
Imagining I’ll have cleared to go back to work when I’m due to start my new role in July. I’ll let you all know. Kind of weirdly looking forward to my next bloods to have the reassurance They’ve not changed and then be able to settle into this mgus way of life really

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Hi @Jenwren_78, thanks for the update and please do let us know what happens, when it happens. Stay safe.

@Jenwren_78 I’m so glad you to hear you are feeling ok. And as Erica says, please do let us know how you get on

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I had a telephone apt with A Dr at occ health. He began by saying he’d had a look online and read about mgus and was relieved to see it was very unlikely I would ever progress to myeloma. As it’s 1% a year risk.
He said from my notes he could see my haematologist had said I had intermediate risk of progression.
He said for work I would fall into vulnerable group although with mgus I had an extremely small increased risk of infection (again he’d read this online he said)
He asked how I’d come to diagnosed and how I felt my health both physical and mental was over the last 6 months.
He has cleared me back to work as I’m going back to my new role which won’t include any clinical procedures.
Recommendations were not to work with any known or suspected cases of covid 19.
No aerosol generating procedures.
And in an area of close contact working for longer than and hour with Other people I should be moved to a less busy environment.
And follow all social distancing hygiene guidelines.
So 14th July when my new job starts off I go.
I should have my first follow up by then too. Which I’m thinking may happen as we seem to be getting closer and closer to being back to normal

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Good morning @Jenwren_78. Your call with occ health seems to have been quite thorough. He does seem to have done his homework too. How did you feel afterwards as it is a lot to take in? Do you feel reassured about being able to start your new role? Good luck, and let us know how things go

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@Jenwren_78, I am glad you have your telephone appointment and it seems quite a lot was covered, how did you feel afterwards?

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