Thank you for your response @Erica. I will ring the helpline today.
I’m delighted I have found this website and forum and I think you’re right about searching on the internet too much. I should be able to find what I need here on this site.
I’m going to expand my diary to note my emotions and my symptoms. Just for myself really as I don’t think my haematologist would be hugely interested. Although I feel really lucky to have found him in A&E over Christmas and he does give me a lot of time at appointments.
Now I just need to figure out how this forum work - replies and new topics etc.
You’re 19 years diagnosed and going strong - Excellent news!
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Thanks @Nichola75. I found the monoclonal gammopathy of unknown significance (MGUS) diary on the myeloma uk site and I love it. I am going to expand it to have a Notes section to record my emotions and other symptoms rather than just blood results.
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Hi @E4-T and @Paulette ,
I have just been reading your posts and wanted to reply as I had a similar experience to you when I was told I had monoclonal gammopathy of unknown significance (MGUS) last year. I’m really, really feeling for you and the whirlwind of stuff that must be going through your mind right now.
My monoclonal gammopathy of unknown significance (MGUS) was found whilst doing other tests. My GP didn’t have the time to explain in detail what it was but mentioned it is a precursor to various cancers and sent me links to Macmillan website! Like you, it was a huge shock. I was referred to haemotology but told it could take months before I was seen. I am not a patient person and needed more information so I booked a consultation privately with a haemotologist. I had a full 40 minutes with him to get a proper explanation and to ask questions. He then referred me back into the NHS as at the time he wasn’t too alarmed by my tests.
I too googled everything I could find and scared myself. Googling doesn’t help, and I now come here to get answers and understanding.
I have IgG lambda but still don’t fully understand all the terminology. I had a CT scan last year to check for lesions on bones which was clear, thank goodness but I am having 3 monthly blood tests at the moment as my paraprotein levels are intermediate risk. As others have said above, ask the questions you need answers to and keep asking until you have those answers. I signed up for the OxPlored research and was lucky enough to find a wonderfully caring nurse who gave me a lot of answers to my questions.
Joining this forum and the wonderful volunteers here has helped me so much. I do now have a better perspective on things, but it doesn’t remove the fear every time my blood test looms.
You are not alone in those thoughts and feelings.
Take good care of yourselves.
Hugs xx
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Thank you. I have not been coping too well over these last few days and wondered if I was having some sort of abnormal reaction. I just need to find a way of calming myself down and stopping crying. I think I will call the support line later today. Thank you.
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Oh @E4-T ,
Those are very normal reactions. Things will hopefully settle in time but at the moment it is very understandable.
Look after yourself.
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They are so supportive. I know counselling isn’t for everybody, but if you think it would help MacMillan offer six free sessions. I’ve included the link just in case X
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Hi @E4-T, thank you for sharing what’s been going on for you. I’m sorry to hear it’s been a difficult time for you. It’s so understandable to be feeling how you are and it can take time to process a new diagnosis. You’ve been given great suggestions here already and I just wanted to re-iterate you’d be very welcome to reach out to our Support Team. You can email or call us (support@bloodcancer.org.uk or 0808 2080 888).
Best wishes,
Tanya.
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Hi @Paulette, thank you for sharing about your journey with your diagnosis. Yes please do call us as and when suits you (0808 2080 888) or you can email us as well (support@bloodcancer.org.uk). Take good care of yourself,
Best wishes,
Tanya.
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@E4-T and @Paulette I hope that you realise from the responses on here that your emotions and thoughts are completely understandable and normal, just give yourselves time and tears are better out than in.
I attach a link to the Blood Cancer UK website that might just assist you Blood cancer: mind and emotions | Blood Cancer UK
Be ever so kind yourselves and keep posting
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Newly diagnosed with monoclonal gammopathy of unknown significance (MGUS), pending further investigations - 36yo female, Glasgow based
Hi all,
Finally found what feels like a good informative and supportive page to spill my guts to… I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) in the last couple of weeks, pending further tests and a whole-body MRI.
I had been feeling unwell and in pain on and off for at least a couple of years but put it down to having suffered an electric shock end of 2020. I seen a number of “specialists” including a neurologist, who at no point gave me any sort of diagnostic tests other than a quick chat and “it’s probably a bit of nerve damage and muscle wastage”. Start of last year I was hospitalised as the nerve pain had radiated across my body, again put down to my injury, no tests done.
In July I developed an insufferable itch all over my body with no rash, was totally wiped out and had been having headaches, fuzzy feet, tingling in both arms, and feeling colder than ever (have been cold for years). GP ordered wide range of blood tests and had them done 27th July. I called back the following week and the receptionist told me “no further action”. I said symptoms were still ongoing but she couldn’t give me an appointment for love nor money.
On August 14th I received an appointment letter from New Victoria saying urgent referral to the Haematology Change Consultant. Phoned the GP surgery and got a call back where the GP mentioned they had found some paraproteins in my blood, brushed me off and said “they will know better than me it’s not my specialism”. Coincidentally I had to make an emergency app that week for a bladder infection and it ended up with that GP. I asked her to print out the referral paperwork and she handed me a letter from the lab with lots of info but what stuck out was “URGENT - SUSPECTED CANCER”.
Went to the hospital app on the 21st and the consultant explained there was 11g/L IgG paraprotein in my bloods. I reiterated all my symptoms and she said that it feels those would be unlikely to be related to the suspected monoclonal gammopathy of unknown significance (MGUS) as “it doesn’t have any symptoms”, however reading this amazing forum, we have so many symptoms in common?! Anyway, she said she was ordering an urgent whole-body MRI (letter came today, to go a week on Sunday(!)), took more bloods that day and to go back in 2 months then 3 monthly afterwards.
I’ve read everything I can about monoclonal gammopathy of unknown significance (MGUS) and know a bit already about myeloma as my gran, her brother, and her cousin all died from it, though in their elderly years. My husband and family barely ask/talk to me about it because they’re terrified/“being positive”, and I’m usually the receiver of others’ worries… I just needed somewhere to get this all out my head, and thank you all for your contributions that have helped me know I’m not alone and not imagining all this pain or stupid for contemplating the worst…
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Hi @traumamama28 a great big welcome to our forum and you are now not alone, you are part of our forum family.
You feel free to spill your guts on here, perhaps we understand as no others can.
My husband goes around with his head in the sand and has never asked me about my blood cancer or how I might be feeling, he doesn’t do emotions.
Personally I think family and friends just do not know what to say or do and they are trying to come to terms with our diagnosis too.
Like you I have always been the strong, practical one here for everyone else.
You obviously have read up about your condition and symptoms.
September is Blood Cancer Awareness month and the idea is to ensure the symptoms are recognised more.
Unfortunately I believe blood cancers form a very small part of the medical professions training and also the symptoms can be attributed to a lot of conditions.
If you would like to talk to someone the Blood Cancer support line is there for you on 0808 2080 888.
As you have been so recently diagnosed please give yourself time to come to terms with it, it took me ages and be ever so kind to yourself.
Please keep posting, I look forward to hearing more from you and look after yourself
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Thank you so much for your reply Erica, I appreciate it. My husband is the type who goes from 0 to 100 panic wise, I know he’s trying to seem calm and collected, but it makes me feel alone. I now know I am not by being here!
I wonder if anyone else here had their MRI so quickly after diagnosis? I am torn between happiness because the testing is coming along quickly, and being panicky incase it’s because they are considering me more high risk…?
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Hi @traumamama28 you are never alone on our forum, although you might feel lonely and that is very hard.
As for trying to second guess why you are having an MRI so quickly, personally and not medically, I think it is the luck of the draw. Perhaps there has been a cancellation, who knows.
As I have found there is a lot of anxiety making waiting along the way, I would just be thankful.
My thoughts and emotions have been all over the place ever since I was diagnosed
Please do let us know how you get on and really look after yourselves.
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Hi there
I’m a bit further into the journey as I was diagnosed in 2017 with myeloma
I have found that MRI scans are usually pretty quick when ordered
I had a consultant app a couple weeks ago I have some pain where I have lesions that was on a Tuesday
Wednesday I had a call from MRI to attend that Friday
The quicker you get it done the quicker the results so don’t get too upset by that.
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Hi 2DB,
Thank you for your reply, I appreciate it! I’m glad to hear they have been able to order one so quickly for you too, and hope everything comes back as positive as it can. Please do let us know how it goes x
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Hey there,
It is absolutely normal to experience all sorts of thoughts and feelings when you receive a diagnosis. I went on a spiral and found it hard to pull myself together. I just couldn’t see the point in life. I felt like I had a ticking bomb waiting to go off any minute.
I had no explanation from my GP about monoclonal gammopathy of unknown significance (MGUS) aside from it could lead to myeloma and that I’d need blood quarterly tests. Even now I am getting blood tests but don’t understand what all the results mean. I am hoping that someone will let me know when it is time to worry.
A few months later, I decided to put all my worries aside and make the most of life and live it the best I can.
This condition is not going away no matter what. I’d say buckle up and try and enjoy the ride the best that you can.
It does get easier….
Xx
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Hi @Seasider and welcome to the forum.
It’s great that you have shared your story - it will really support other members.
I’m the same as you, don’t really understand the bloods but I’m sure they will let me know if they were worried.
How long since your diagnosis?
I look forward to hearing more about you 
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Hi Seasider,
Thanks for sharing your own experience, sounds like we’re in a very similar boat, hoping things keep just ticking on for both of us unchanged, and as you say focus on the good stuff! Here if you ever want to chat 
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Hi @Seasider a great big welcome to our forum.
I have another blood cancer but found I was offered no explanation of this diagnosis, the name of which sounded as if it was in a foreign language.
I did not know quarterly blood tests we called ‘active monitoring’ or ‘watch and wait’ and was actually good news.
I found that I had to learn to write down all my questions and be ‘pleasantly assertive’ and not leave appointments till all my questions were answered and clarified.
I think as @traumamama28 says we are all in the same forum rollercoaster boat, no matter which blood cancer we have.
The main thing is to look after and be very kind to yourself and keep posting
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Hi @AllyBally,
I signed up to OxPlored Study too in September last year. Whilst we cannot change the fact that we have monoclonal gammopathy of unknown significance (MGUS), by participating in it, we can help further understanding the progression of it and may be help stop blood cancers developing in future generations.
Best wishes
Helen
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