Good afternoon, i got diagnosed with Monoclonal gammopathy of unknown significance (MGUS) 18 month ago, have my bloods done every 3 months, i am extremely fatigue to the point where im falling asleep at my desk at work, i get cramps in my legs/arms and pins and needles numbness in one of my feet, my consultant brushed it of when i told him, and i also read every where it causes no systems, but it is really affecting my mental health too with all the systems, anyone else have/feel the same. Tracey
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Hi @TraceyAnne a great big welcome to our forum
I wonder about seeing your GP to make sure your symptoms are not due to anything else.
Also tell them the effect on your mental health to see if they can help.
I find I deal with appointments better if I have written down everything I want to say beforehand
I have another blood cancer and fatigue is one of my main symptoms and over the years I have got to know myself and what fatigues me.
I do not deal with what personally stresses me well and also some emotional, psychological, physical or practical aspects.
I also found it helped me to actually get some fresh air and appropriate exercise at lunchtime with my fatigue, cramps and numbness. I used to wiggle my toes and legs whilst sitting at work which helped me as well.
The Blood Cancer UK support line is there for you on 0808 2080 888
I hope others will be able to share their experiences.
Look after yourself and be very kind to yourself and please do keep posting. how you are doing
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Hi @TraceyAnne and welcome to the forum .I am sorry to hear of your symptoms .
.Do you know the name of your paraprotein ?I have IgG Kappa, a different paraprotein can cause numbness ,pins and needles.
Could you ask your GP to investigate further as there may be another cause or be able to talk to him about how the symptoms are affecting you .
He may refer you to a Neurologist.
I was referred to a neurologist for neuropathy and she discovered Monoclonal gammopathy of unknown significance (MGUS) from a blood test.My neuropathy isnt connected to Monoclonal gammopathy of unknown significance (MGUS).
I am on 4 monthly blood tests,if you are on 3 monthly blood tests you are being closely monitored so that is good.
I have had a lot of support from the Nurses at Blood cancer Uk,and the support from Www.myeloma.org.uk
They have some very useful info on their web site with booklets and videos,there is one on neuropathy.
Hope that helps a little and I can understand what you are going through so hope you get an answer from your GP.
Look after yourself and keep posting
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Really great to hear from you again @Bannanacake with your update.
Look after and be very kind to yourself and please do keep posting
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hi Erica, thank you for your lovely message, i will check in with my GP again, thank you for your advise very much appreciated.
have a lovely day take care Tracey
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hi Bannanacake ,
I’m not sure what mine is called but i will check all my letters i have had and get back to you.
thanks for the other info i will take a look at the websites.
you take care too Tracey
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Hi @TraceyAnne.
I can see you have been given great advice already. Definitely contact your GP and see if they can help.
Have you got a clinical nurse specialist you could contact to talk things through?
It must be really difficult with the symptoms you describe. Is your workplace aware? I wonder if there’s anything they can do to support you?
A diagnosis can have such a huge impact on mental health. Remember, the support line is there if you need it and counselling if you feel that is something that would help.
Please take care and keep us updated X
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Hi Nichola, thank you for response, i do say work do know and have been supportive even leave me when fall asleep at desk lol.
i made a doctors appointment for a weeks times see what they say, when i spoke to the reception at the doctors she said it could be menopause, being 50 i suppose is about the right time. i will keep you updated.
its just lovely to speak to people who understand and want to listen to you.
Tracey
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I too have recently been diagnosed with Monoclonal gammopathy of unknown significance (MGUS) and am worn out, totally useless some days, its a shame that online everything seems to say that there are no symptoms, ? and it wont affect normal life, when in fact being so tired out, really does make a difference to everyday life now, I wish the websites would acknowledge that YES there are symptoms involved, and at least then you would not feel that your on your own with problems,
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I’ll be turning 50 soon as well. Just got an appointment to talk through my tiredness, which has been suggested, could be the menopause. Worth looking in to everything isn’t it. Let us know how you get on with your GP x
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hi Coluba 26, i totally agree, with you they should , its so frustrating and makes you think is this in my head.
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Hi bannanacake,
i have IgG lambda, and they have said I’m going through the menopause to so have put me on HRT got to go back in 3 months to see if this has helped me. Tracey
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Hi Columba
I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) and Paraproteinaemia in 2021. This was picked up after I went to the doctor about pains in my legs, which I still have to this day. I was also told there were no symptoms with Monoclonal gammopathy of unknown significance (MGUS).
I am currently waiting for results of an MRI on my back to see if its connected to that. Prior to this, the pains have been put down to several other things but I’m convinced it’s the Monoclonal gammopathy of unknown significance (MGUS).
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Hello all,
I’m so sorry to read about how fatigue has been affecting you. It is true that the information around Monoclonal gammopathy of unknown significance (MGUS) states that there are no symptoms, so as already suggested it is worth checking that any symptoms are not caused by something else. And do mention again to your consultant - even if you felt brushed off before, it’s important to keep them up to date with how you’re feeling.
As you are new to the forum @TraceyAnne (big welcome 
) I just wanted to pop on here and post a link to this previous thread about fatigue just in case it helps: Ask the Nurses - Managing fatigue - General chat - Blood Cancer UK Online Community Forum One of our nurses, Gemma has a post early in the thread with lots of links to information about coping with fatigue. While the advice has input from people with blood cancer, I think some of the tips may help anyone suffering with fatigue regardless of the cause.
Take good care of yourselves,
Ali
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Hi I began to have numbness in my toe on my right foot about a year ago . I made an appointment with the doctor and at first they thought it might be gout ? After 4 blood tests and numerous other tests they told me I had Peripheral Neuropathy, but also found I had M-gus?
My blood results showed it was low , and now after banging the drum I’ve an appointment to see a Haematologist at a hospital in Eastbourne ( I live in Brighton ) this month (February) .
I found this site by chance today and have been reading all the posts , and it’s very confusing reading all the stories etc ? Since I was diagnosed with Neuropathy the numbness which started in my right foot big toe has now progressed to my other foot but only on the small toes ? And also the backs of my ankles !
It seems to me that the neuropathy I have is being caused by my Monoclonal gammopathy of unknown significance (MGUS) ? as I have read that some people are reporting having numbness with their Monoclonal gammopathy of unknown significance (MGUS) ?
My doctor did say that Monoclonal gammopathy of unknown significance (MGUS) is a newly diagnosed condition and as there aren’t really any symptoms most people don’t know they have it . Obviously some go on to be diagnosed with myeloma?
It frightens me to think that I might get myeloma, but one thing it does do is remind me that live the life you have now and do as much as you can !
I’m 67 and retired 6 months ago . My wife and I have many holidays booked in fact we are off to Australia for a month in March ! So I think it’s best to be positive but be prepared that at some point your health may be compromised. Also I think it’s very important to have a healthy diet and cut out alcohol if possible or lower your intake .
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It can be quite heartbreaking , being told You have M Gus, but hey, dont worry you wont have symptoms, it really is, Your shattered out some days, totally useless, and then the pins and needles and other bits, which you never had before, Surely its time the GPs acknowledged that this diagnosis actually does HAVE SYMPTOMS, and its not all in our heads ?
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Do whatever it takes, as there are no guidelines, and with the attitude that there are NO SYMPTOMS, its so hard trying to say that there are , I have been now down to my GP more than ever before, with tiredness, pins and needles, and more, and he seems to think I am depressed ? well he got that one right, but I am only down, because I feel unwell,
Erica, can you tell me how to sign out of this site ? I cannot find the sign out sign Thanks
Hi @Columba26 I will copy your post to the Blood Cancer UK support services for you @BloodCancerUK-SupportTeam .
Hi @Palmsprings welcome to our forum.
I reckon the unknown is scary and frightening.
However I like your philosophy ‘positive but be prepared’ and do as much as you can. Nobody in this world knows what the future may bring.
Enjoy Australia and I look forward to hearing more about you.
Look after yourselves