Hi to everyone here,
I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) yesterday after a lengthy wait for results of all tests and scans for myeloma. I am unsure as to where I go from here and what to expect as from having Monoclonal gammopathy of unknown significance (MGUS)? The consultant I saw for my results didn’t even mention it was Monoclonal gammopathy of unknown significance (MGUS) I had to ask him if it was this after researching Myeloma. He just informed me that it would be monitored every 6 months or so? Is this for the rest of your life that it’s monitored? I have quite a bit of back pain and numbness tingling in my legs and hands, especially at night. I am also suffering with night sweats and daily hot sweats that are becoming an issue now. I cannot sleep due to aches and pains, and there is no comfy place whichever way I turn. I am also having neck aches and knee pain although it states that you don’t have any symptoms with Monoclonal gammopathy of unknown significance (MGUS)? Is this normal? Sorry for ranting on regarding my own symptoms, as I’m sure everyone on here is also suffering with their own symptoms, I just wonder if this is what you have to expect from now on? as there in no treatment for Monoclonal gammopathy of unknown significance (MGUS) and at a loss as to what to do? Any advice will be much appreciated x
Hi @Shelby and a big welcome to the forum.
I remember coming away from my diagnosis appointment (I have a different blood cancer) and having so many questions. I often think we need a follow appointment to ask these once we start to process the information that’s come as such a shock.
I know there are other forum members on here with the same diagnosis and I’m sure will share their experiences.
There are links below to some recent conversations around Monoclonal gammopathy of unknown significance (MGUS).
MGUS (monoclonal gammopathy of undetermined significance)
6 months after MGUS diagnosis -
I have also included the link to the I formation on the Blood Cancer UK website. Apologies if you have this already - I don’t want to overload you.
What is MGUS | Blood Cancer UK
I was wondering when your next appointment is. I would suggest writing all those questions down. And remember. The support line is there if you need it.
Never apologise for ranting (not that I think you are ranting). This is a space you can say how it really is for you.
Hi Nichola75,
Thanks for replying and sending links for me re Monoclonal gammopathy of unknown significance (MGUS). Don’t mind me asking but what type of blood cancer is it that you have? I hope you are coping well with it all xx
I think you are right in what you say, we do need a further appointment to discuss all our questions after processing everything!
I think I’m still a little in shock from yesterday’s diagnosis and quite upset and angry at how the haematologist trivialised it after having to ask him if it was Monoclonal gammopathy of unknown significance (MGUS) that I had? as he just kept saying there was no cancer, I think I was just relieved at hearing that said to me. He said he would monitor it in 6 months time. I just feel a bit left in the dark with it all, not knowing what to do and where to get any help/advice. So thank you for helping me and providing the information and hopefully other members as you say, will also share their own experiences with me and we can all help each other xx
Hi - I’ve been diagnosed with Smouldering Multiple Myeloma 5 weeks ago. I was initially in shock, my emotions are ip & down but niw need to get used to regular blood tests. My Haematology team are fantastic, just have to rely on them monitoring situation. I went to a support group locally last week - that definately helped,listening to others & you soon realise everyone is on a different journey. Stay positive & with support you’ll get used to things
Hi again. I have follicular lymphoma. I had two ops and radiotherapy in 2017 and have been on active monitoring since.
Was you assigned a clinical nurse specialist?
I was very lucky with my consultant and would’ve found it difficult - as you did - with the way you were told and questions you had to ask.
The support line is really great if you think it would help talking things through? It was something I found really useful.
Please keep us updated on how you are getting on 
Hi there @Shelby
I’m popping a link for the Monoclonal gammopathy of unknown significance (MGUS) diary from myeloma uk
It may be helpful to keep your diary as going to appointments we can forget what we want to say
I suggest reporting any new changes of pain etc when they happen.
Hi there
I’m linking this podcast which you may find helpful
I have and I’m 8 years into my myeloma journey
Thank you all for being so helpful and sending the links etc it’s all been a whirlwind since I was told and still trying to understand it all. It’s so kind of you all to take the time out to share your own stories with me. Especially whilst you are also going through your own journeys of your own personal diagnosis. I wish you all well and sending lots of love & positivity your way…
I was diagnosed about 2 weeks ago. I have these exact same symptoms. I was originally given a 2vweek urgent referral due to blood results but the haematologist refused the referral saying it was Monoclonal gammopathy of unknown significance (MGUS) and when I saw the Dr she had no knowledge of Monoclonal gammopathy of unknown significance (MGUS) and I had to badger her to retest my bloods in 3 months but that’s all I’ve had. I feel dismissed by the system. I hope you have more luck x
Hi MzFittttt
Sorry to hear you are experiencing similar symptoms and are also being left in the dark, regarding your diagnosis of Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS))). I wasn’t even put on the 2 week urgent referral list by my GP even though it showed abnormal blood results in April, I was put through as routine and waited 2 months to even see a haematologist! It really is shocking isn’t it. Why did the haemotologist refuse your referral by stating it was only Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS))? How did they know that without doing the tests first? I had to ask my haematologist if it was what’s called Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS))? Only because I had been researching myeloma since my GP told me it could be one of 3 things, Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)), SMM, MM and the tests would say which it is? The first consultant I saw was a lovely lady and really helpful, but the consultant I saw for my results was sadly the opposite. Are you experiencing back, hip and joint pains as well? I get weakness, fatigue, numbness in my fingers, can’t sleep for hot sweats and burning feet, neck pains going into my head, and stomach thigh, knee pains almost daily now. It stops me from exercising and I just seem to put on weight which is getting me own and feeling very low at the moment. What symptoms do you have? Considering that they say the Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) has no symptoms and causes no issues, this I cannot believe feeling the way I do. Are you of the same opinion? I feel we should have more information, more helpful advice and some sort of treatment for Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) personally. What and where do you go to get any help with all these symptoms as like you say the haematologist’s just seem to send you away, apart from having regular blood tests, but nothing in response to any treatment for obvious symptoms relating to Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS))? I do hope that you are taken more seriously and get the advice and help you need in the future. Please keep us all updated and stay on this site as it is so helpful. Sorry if I’ve gone on a bit! Please do keep strong and keep positive vibes and you will get through this as I hope we all will xx
Hi Frank, Thanks for replying to my post. Hope you don’t mind me asking but did you have Monoclonal gammopathy of unknown significance (MGUS) first? Just wondering if you did, then did it turn into SMM? Or was it SMM straightaway at first diagnosis, without having Monoclonal gammopathy of unknown significance (MGUS)? Sorry for all the questions just trying to understand this blood disorder and how it works? Hope you are keeping well and feeling more positive on your personal journey through all of this.
Hi - I don’t mind sharing, I find it my way of coping & getting to grips with everything. They initially thought it might be Monoclonal gammopathy of unknown significance (MGUS) but explained, they couldn’t confirm till after another blood, CT scan & bonemarrow biopsy. That period of waiting, nearly 5 weeks were tough - went back & diagnosed SMM. Now about to have my next bloods (2months) on Thurs with Consultant meeting scheduled mid Aug (2 weeks).Just now getting ready to wait for results. Went to support meeting 2 weeks ago, which I found really helpful & were able to listrn/talk to others going through Myeloma. My key take away is, on different paths but for me, its now getting used to regular bloods & wait to see if/when it might change. Guess I can describe as a roller coaster, im currently on straight level before going down & up. Hope this helped. Ps, someone shared podcast on SMM which I will share & is a good listen
Podcast on SMM Unsupported browser
Hi MzFitttt
Just wondering how you are getting on? I hope you are getting some help and the correct treatment plan offered to you after being diagnosed with Monoclonal gammopathy of unknown significance (MGUS)? It is shocking to hear that you have been abandoned like this and I sincerely hope you are fighting back and making sure that the Dr’s and Haematologists at the hospital are treating you as per protocol for Monoclonal gammopathy of unknown significance (MGUS). Please keep us updated as you are not alone on this site as per the other lovely members that replied to my post above, we are all here for each other. Best wishes to you
Thank you AFrank for your reply and answering my load of questions! I like your positivity it sounds like you have got this! Thank you for sharing the podcast also, very interesting and informative listening on SMM. Keep in touch and keep up the good work and positive vibes my friend! 
You’re welcome, it’s taking me some time to get my head round it. Hope all goes well for you & keep in touch
Hi
I have just started my first round of DVTD for multiple myeloma which was confirmed on 01/07/25. I had previously had Monoclonal gammopathy of unknown significance (MGUS) for 15 years apx. Like you I had regular blood tests every 6mths to monitor protein levels etc. Over the last 12 mths, I have had constant viruses and infections which finally tipped my levels over the edge.
The monitoring did help for me and I hope it will for you. Only have a weeks experience of treatment but mild reactions at the moment and I know that I’ll get a positive end result.
Good luck to you
Hi Treacle57,
Thanks for replying. I’m so very sorry to hear that having endured Monoclonal gammopathy of unknown significance (MGUS) for 15 years which has turned into Myeloma. Hopefully, the careful monitoring of your Monoclonal gammopathy of unknown significance (MGUS), as you have mentioned, has caught it earlier and you are now being treated for it much sooner. Did you have any symptoms with your Monoclonal gammopathy of unknown significance (MGUS) over the years? I know you say the constant infections/viruses finally tipped your levels over the edge. I feel lucky that I haven’t suffered with infections/viruses apart from a few bad reactions to insect bites! I don’t feel I’m getting anywhere with my GP/haematology. I had to ask the consultant if it was Monoclonal gammopathy of unknown significance (MGUS) that I had in the first place? he was very short on providing any information to me, even after waiting over an hour before getting my results! Not sure which type of Monoclonal gammopathy of unknown significance (MGUS) it is? as I believe there are various types eg IgM, IgA? They said there was nothing more haematology could do for me other than monitor me every 12 months. Even though I have two blood disorders to deal with having Haemachromotosis as well as Monoclonal gammopathy of unknown significance (MGUS). I have had to beg for an MRI scan even though I’m back and forth to the GP with nerve pains in my legs, knees ache, back aches and numbness & tingling in hands, legs, feet along with hot sweats that keep me awake during the night. Purple coloured type rash has appeared on my upper back and will not go away and I do worry about the two blood issues combined. 
Sorry for the rant. I do think I have been getting rather down with it all lately. I need to keep positive mind and not let it get to me so much! 
Best of luck back to you… I wish you all the very best on your journey 
Please do keep in touch and let us know how you are getting on
Best wishes x
Hi Shelby
I used to get very frustrated at the gp’s as whenever I felt ill I had to explain my Monoclonal gammopathy of unknown significance (MGUS) to them.
I had a bone marrow biopsy 10yrs ago and then the blood monitoring every 6 mths. To be honest it’s almost a relief to be finally diagnosed and get some treatment started. Always wondering if it was this test that was positive.
I’m on the first week of my first DVTD cycle so just getting started. Sleeping is a real challenge and a few other manageable things. I’m on my way though🤞
Hopefully you will get some help soon, and yes, keep in touch.
Best wishes
Teresa
Hi all
Totally understand feeling re Monoclonal gammopathy of unknown significance (MGUS) diagnosis and I feel for you. I was diagnosed last year (aged 44) with Igm Lambda paraprotein and recently have a change in my bloods that seem contradictory and that my doctor can’t explain. My gp contacted haematology and they explained to her but I don’t understand their response except they say wait 6 months to see if changes. My doctor freely admits she doesn’t understand it at all, you’d think you’d be referred to haematology to have it all explained fully. I’m worried sick I have more issues going on but I’m told to wait 6 months to try this specific test again, (have other bloods 3 monthly) I just want to understand it as it’s really affecting my mental health. Doesnt help my husband died of a rare cancer very quickly 4 years ago. It feels like you’re left on your own trying to get your head around things you don’t understand.