Hi - I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) in 2021. The protein level remains under 3 on blood tests, which I have every 6 months. I’ve recently (within the last 6 months) developed strange skin sensations - not itching but rather stinging, tingling, pin-prick-like, crawling sensations. They occur randomly all over my body, my head and face all the way to my toes. If I rub / scratch the area briefly they go away but then quickly start elsewhere and the cycle goes on. They are worse at night but I feel them most of the day recently. There is nothing on my skin - no rash or anything, not even dryness. Doctors aren’t sure what is causing them but have suggested it may be due to Monoclonal gammopathy of unknown significance (MGUS), anxiety or small nerve fibres just going haywire.
Has anyone else with Monoclonal gammopathy of unknown significance (MGUS) experienced anything like this?
Hi @Dassa and a big welcome to the forum.
I have sofferent blood cancer but I’m hoping others can share their experiences with you.
It must be a very uncomfortable sensation. Has your medical team suggested anything that could help?
I’m sure you’ve done lots of reading but here is a link to the information on the website:
There have also been some previous posts about this. Just type in key words in the search bar.
Hi @Dassa a great big welcome to our forum and @Nichola75 has given you a great link.
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses for you as well.
Please do keep posting how you are doing and really look after yourself
Hello there @Dassa, welcome to the forum! I’m really sorry to read of your Monoclonal gammopathy of unknown significance (MGUS) diagnosis and those skin sensations. Although I was diagnosed with a different blood disorder, Polycythaemia vera (PV), I recognise your descriptions of strange sensations.
Living with PTSD means I’ve had to get used to signs of anxiety and how it presents physically and those skin sensations don’t sound entirely like anxiety. Anxiety for me kind of comes from inside my body and around my heart and lungs and up into my head, sort of inside-out, but not on my skin. Hopefully it’s not anxiety that you’re experiencing. I imagine the sensations and how they affect your sleep might cause stress, so perhaps keep an eye on that.
The tingling, pinprick and crawling sensations you describe are familiar though. One side effect of treatments for Polycythaemia vera (PV) is that my blood is thinner and can travel more easily around veins and into extremities like fingers. My haematologist told me that my sensations could be my blood now reaching closer to the surface of my skin which may be causing the tingliness. As it doesn’t appear to be anything I can do about it, I’m learning to not think or worry too much about sensations when they arise. Easier said than done!
I’d say, keep letting your doctors know about the sensations as research is ongoing with these disorders and there may be solutions coming. Perhaps look at your blood test results if you have access—does anything seem to have changed in your numbers before and during the timeframe when the sensivity increased? If so, maybe draw attention to that when you speak to a haematologist.
Thinking of you @Dassa as you go through these strange sensations. Hopefully they pass uneventfully!
Oh @Dassa, I’ve just been reading the Blood Cancer UK information about MGUS out of interest regarding your skin sensations and it mentions;
“A few people with Monoclonal gammopathy of unknown significance (MGUS) experience numbness or tingling in their hands and feet, or problems with their balance. This is a type of nerve damage that’s sometimes caused by paraprotein in the blood. The medical name for this is peripheral neuropathy.”
It also says to let your doctors know as they might refer you to a neurologist. Hope this helps!
Duncan, I’m familiar with the Monoclonal gammopathy of unknown significance (MGUS) neuropathy - apparently they occur on the hands and feet only and feel more like pins and needles. They also supposedly appear when protein levels have risen and Monoclonal gammopathy of unknown significance (MGUS) shifts to something else that is symptomatic. This is according to my haematologist. The sensations I’m experiencing dart around my whole body randomly.
Doctors are suggesting going onto a low dose of amitriptyline, which is usually used at a higher dose for depression. I’m not keen to do this right now since this is just masking the symptoms rather than treating the unknown cause. I’d rather understand more about what is causing these symptoms.
You’re more than welcome, @Dassa! I’m glad you’ve got some clear information from your haematologist and potential courses of treatment.
Still, it sounds frustrating to be offered another medicine to mask the symptoms, like you say, rather than get to the root of their cause. Looks like amitriptyline has many contraindications so I’d also be wary of adding that.
I’d be tempted to push for an appointment with a neurologist as your symptoms sound like they match their speciality. I’ve found it’s often good to get second opinions if you can.
Sorry you’re experiencing those sensations at all, of course. Let us know how it goes. And don’t forget to check around the forum as others with Monoclonal gammopathy of unknown significance (MGUS) might have some more salient advice.
Hi there I’m knew on here. I had the very odd Monoclonal gammopathy of unknown significance (MGUS) diagnosis that is nothing but something !!!
So after 2 blood tests and consultation in oncology ward, GP,s putting a extremely bad result on my patient access records saying I had kappa light chain myloema very scary when in fact it was error !!
All adding to my Monoclonal gammopathy of unknown significance (MGUS) paranoia as literally didn’t understand it even though I have read everything it still confusing.
I feel that I am experiencing fatigue and skin crawling on my left shoulder, it has been happening for months. I just ignore as so many things going on just thought I’d reply as it is very odd sensation and I had no idea it was connected to Monoclonal gammopathy of unknown significance (MGUS).
I saw my consultant today who assured it was all ok the result was 2.8 which is very low but classed as pre-cancerous condition which is why I will be monitored by blood tests once a year now and follow up call off a nurse.
So I feel this is very positive although still confusing .
Hope to hear off other Monoclonal gammopathy of unknown significance (MGUS) people or anyone who understands it !
I like to understand and look into all relationships linking to it so good to piece it all together.
I’m waiting to find out why I have severe pain in my back and again is that linked to Monoclonal gammopathy of unknown significance (MGUS) ???
The concerning fact is it’s there but nothing to be alarmed about.
Hi @Pepsi great to hear from you and I am glad you have joined our forum.
Although I have another blood cancer I certainly remember all the thoughts and feelings you are describing, I was in shock for ages, I think they are very natural.
You have entered a new world of medical speak
I was diagnosed 20 yrs ago and I have been on watch and wait (active monitoring) which you talk about ever since.
I attach the Blood Cancer UK details on Monoclonal gammopathy of unknown significance (MGUS) MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
As for your symptoms, it is always difficult to know what to attribute to our conditions and what might be completely unrelated. Even if others on here have the same symptoms it is worth getting them checked out with your GP or specialist nurse and see what they advise. Especially the severe pain in your back.
I hope others can share their experiences
Please do let us know how you get on and I look forward to hearing more about you.
Please be really kind and look after yourself and please do keep posting
It’s very strange and I know I should not really worry just have other things going on and keep linking it all.
Then I worry if DR actually looks at bloods properly and analysis’s them or wait until it actually is an actual concern.
As one of mine said satisfactory and one said oaraproteun detected and done looked on the edge of normal. I do wish they would u deterrence that all these things play on our minds and that an extra 10 mins explaining to us would actually help.
Instead it’s a quick text it’s all ok, but then no you do have something though it’s a pre-cancerous condition but don’t worry as only 1% get it.
Literally feel a bit fed up of health at minute but I know I should not as I am in very lucky.
I’m so grateful to read your posts because I learn so much about the experiences of others with this condition which I know is not rare, but you are the only people I can interact with who are living with it. Thank you!
My name is Emily (Ebrandt76) and I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) IN 2020. I’ve got the peripheral neuropathy with the assorted pain types and balance issues, but 6 months ago I developed a patch on my right wrist which has no distinguishing marks, but feels exactly like a burn from touching a hot surface. There’s nothing to see at all. The burning hasn’t stopped or changed for 6 months. It’s not inside, only the surface of the skin and nowhere else.
I also have increasing lumbar osteoporosis and bouts of intense bone achiness. Has anyone ever encountered this or is it unrelated to my Monoclonal gammopathy of unknown significance (MGUS)? Thanks!
Welcome to our forum @Ebrandt76 isn’t it difficult to know what symptom is attributed to which condition and I wonder what your consultants say and hopefully members of the forum will be able to share their experiences.
The Blood Cancer support line is also there for you on 0808 2080 888
Look after yourself and I look forward to hearing more about you soon.
Welcome to our forum - I’m so glad you found us and that the posts are helpful. It can be good to connect with others going through something similar to you.
Have you discussed your achiness and patch with your healthcare team? If not then we’d advise you get in touch with your GP to discuss further with them. It is worth doing so to get the reassurance and also in case they want to look further into what may be causing it. Our free information booklet on Monoclonal gammopathy of unknown significance (MGUS) could be helpful to read through too: Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK Shop
