Hi
I started with leg pain back in 2020 which I put down to lots of walking during lockdown. After visiting the doctor and bloods being taken it was found I had Monoclonal gammopathy of unknown significance (MGUS) and paraproteinaemia . My legs are still painful 4 years on. I’ve just recently had an MRI on my lumbar region as the doctor thinks it may be coming from my back. Has anyone else with Monoclonal gammopathy of unknown significance (MGUS) experienced this?
Also, re Paraprotein Quantification 1 readings, which have been 5.4, 4.8, 6.8 and 7.9. When should I be worried? My doctor was unsure what these readings meant.
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Hi @JoPea welcome to our forum.
I hope someone will be able to help with their experiences.
I will also copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses and the Blood Cancer UK support line is there for you on 0808 2080 888.
I look forward to hearing more about you and really look after yourself.
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Hi @JoPea ,
Welcome to our forum and thank you posting.
Sorry to hear that you are experiencing painful legs. I am glad to hear you have had a recent MRI scan to investigate this for you. Have you had the results back as yet?
In Monoclonal gammopathy of unknown significance (MGUS), the bone marrow, which is the factory that makes your blood cells produce a type of antibody which has no useful purpose in the body. This is called a paraprotein and this is what your readings refer to. Therefore, ideally you should not have any paraproteins in the blood but from your readings, I can see you have a small amount.
I am sorry to hear that your doctor was unable to reassure about your readings. Please can I ask if your Monoclonal gammopathy of unknown significance (MGUS) is being monitored by your GP or by a haematology team? If you are being monitored by your GP it might be worth asking to be referred to a haematology team so you are supported and monitored under a specialised team.
Your paraprotein bloods should be monitored every few months along side other blood tests including full blood count, renal and calcium levels. These are also taken into consideration when monitoring Monoclonal gammopathy of unknown significance (MGUS). I have enclosed a link to our information on Monoclonal gammopathy of unknown significance (MGUS) which I hope you will find helpful MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
Take care
Fiona ( Support Services Nurse)
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Hi Fiona. It was only yesterday that I had my MRI so no results as yet. I am monitored by the doctor every 12 months for paraprotein, both blood and urine. I am led to believe that if the paraprotein isn’t in my urine then it won’t progress to myeloma.
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Hi @JoPea,
I hope you get your MRI results soon.
Myeloma progression can be measured by the presence of an increasing paraprotein in the blood and/or urine as well as other symptoms. I don’t know if you have had a chance to have a look at the information I linked in my previous post but Myeloma UK also has information which may helpful and discusses this is more detail which I have included here Myeloma UK MGUs information
Whilst Monoclonal gammopathy of unknown significance (MGUS) can be monitored very well by GPs, in your case it might be worth asking to be referred to a haematology team to ensure you get the right information and reassurance you need.
Let us know how you get on with your results.
Take care
Fiona ( Support Services Nurse)
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Hi Fiona. Thanks for both lots of information which I’ve read and found to be very informative.
I will update you when I receive my MRI scan results. I will also speak to the GP re a referral.
Can I just ask if Basophil and eGFRcreat results are looked at when someone is diagnosed with Monoclonal gammopathy of unknown significance (MGUS) as mine have come back as 0.1 (normally 0.0) and 70 respectively. These are both out of the normal range but are marked ‘no action’. Is this something I should be discussing with my GP?
Thanks again.
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Hi @JoPea,
You are very welcome.
All your bloods should be reviewed. If no action is noted this normally means that the result has been looked at by a clinician and no further action is required or it is not concerning. You can always discuss with your GP if you are worried.
Take care
Fiona ( Support Services Nurse)
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Hi i was diagnosed with igm Monoclonal gammopathy of unknown significance (MGUS) in 2018 & curry my igm level is 7 & I suffer with lots of neck & back pain, i have a severely compromised immune system & over the past year I’m constantly getting infections which often take 2 lots of antibiotics to fight off.
I have ivig therapy every 4 weeks in the hospital cancer unit as I’m not producing enough healthy antibodies to fight infections.
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Hi @Jenny82 a great big welcome to our forum and thanks so much for telling us how you are at the moment.
I hope that you will find our forum supportive, I do.
Please do keep posting as I look forward to hearing more about you.
Really look after yourself.
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Hi Erica thank you so much 
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