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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Hi Fiona
It’s a while since I’ve posted but would appreciate some advice. As previously posted I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS)’ a few years back and have yearly tests. I’ve just recently had bloods taken as I’ve been feeling really tired and just generally unwell. My legs are still painful, especially my left one. I know I’ve got a touch of arthritis in my knees but this pain is affecting my everyday life and I think there’s more going on than the arthritis. I’ve also had dry eyes and blurred vision, having to keep blinking to get clarity. I’ve been to the optician and they have said I’ve got a haze over both lenses. There was no mention of cataracts but I’ve read that there is a condition called paratrotenemic keratopathy. I only read about this after my visit.
I have made an appointment with a doctor to further discuss these issues plus blood results for ESR 39 and Serum Folate 2.5, both which have come back as no action. My folate has progressively gone down, my last test being 4. Bence Jones came back clea. I was just wondering if there would be another examination/scan that I could ask for regarding my leg and could it be to do with Monoclonal gammopathy of unknown significance (MGUS)?
Any advice would be appreciated.
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Hello @JoPea ,
Sorry to hear that you are continuing to have painful legs, this sounds frustrating for you.
It sounds like you are doing the rights thing and is reassuring to hear that you have an upcoming appt to discuss these issues and that the tests you have had have come back as no action required. We would suggest reiterating to your GP about your folate going down as this can cause leg pains.
Your GP could refer you for an ultrasound or other scans to look in more detail at your leg.
Could we check with you that your leg is not red, swollen or hot to touch? as this would need immediate attention to rule out a clot.
Sometimes Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) can cause tingling/ numbness to hands, feet, arms and legs, but this should be assessed by a doctor. For further information about Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) and symptoms, our colleagues at Myeloma UK have a detailed info sheet that may be beneficial MGUS Infosheet.
Do take care, and keep us updated.
Warm wishes,
Emma (Support Services nurse)
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Hi Emma
I read about the folate possibly causing nerve pain. Is that correct? My folate has declined each year, wasn’t sure if it was an age thing or something to do with Monoclonal gammopathy of unknown significance (MGUS). I’ll certainly ask the doctor.
I don’t have any redness on my leg but I do experience tightness and swelling. I did tell the doctor when I first went about my legs that I had a numbness on the outside of my left knee but he didn’t seem concerned about it.
I will keep you updated.
Thanks for getting back to me.
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Hi Emma
Have just returned from the surgery where I discussed leg pains and low serum folate. On asking about ultrasound I was told there were not really any other investigations that could be done on the legs. MRI/X-rays had already been carried out. Regards the serum folate, I was told it was borderline normal at 2.5 and it was suggested I buy some multi vitamins with folic acid.
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Hello @JoPea
Hope you are doing well.
Thank you for updating us.
It sounds reassuring that they have not found anything of concern but can imagine it is frustrating that they have not offered anything else for your leg pains, have they said if they are going to do anything more about this for you?
Sometimes multivitamins & folic acid can help with cramping and certain pains/ numbness. We hope this helps for you.
Warm wishes
Emma (Support Services Nurse)
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Have just had a private appointment with a physio to ask her take on things. She is confident that the pain in my legs is from the arthritis plus I’ve got a nerve issue in my right leg and an issue with the sacroiliac joint on my left side. I have started taking Glucosamine/chondroitin etc as she suggested. She assures me it is nothing to do with the Monoclonal gammopathy of unknown significance (MGUS).
I have also put my name forward for the Monoclonal gammopathy of unknown significance (MGUS) study which, as well as helping them to understand why some cases progress to Myeloma, it might aid me in my understanding of things as well.
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Good evening @JoPea
Thanks for your reply.
It sounds reassuring that you were able to see a physio and we hope this was helpful.
We are sorry to hear about the pain, this must be frustrating for you but sounds like you are doing all of the right things.
Just in case it’s useful at all, we do have a page on Blood cancer and keeping active | Blood Cancer UK which has some helpful hints on little things we can do to try and keep active and includes some videos.
Awh that is lovely of you to put your name down for the study and will be so beneficial for others as well as likely to be a positive experience for your understanding as you mentioned.
Take care & keep us updated 
Emma (support services nurse)
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