I gave recently been diagnosed monoclonal gammopathy of unknown significance (MGUS) IGg Lambda and have numbness, weird sensation and chills in hands and feet.
As you said it is common with monoclonal gammopathy of unknown significance (MGUS) but can this be confirmed somehow?
I have seen neurologists and as per them there is no nerve damage.
Thanks,
Swaradni
I have similar, numbness mainly in my legs, and strange hot or cold feelings. I think quite a few of us with monoclonal gammopathy of unknown significance (MGUS) experience these symptoms, if we can call them that.
I have responded to you on your other post @Swara
Hi @Annie666 what have you done about your symptoms?
Take care
Thank you for sharing.
It helps by knowing I am not only one with such problems.
Do you know is there any support group with such problems ?
I was just more frustrated on not getting any diagnosis since 8 months.
Well now I think I got it monoclonal gammopathy of unknown significance (MGUS) and it is still very confusing.
Thanks,
Swara
This site is very good for helping with worries and queries. I think Erica has responded to you and she is very good.
I haven’t complained about it as it is tolerable, its just a nuisance. Also if I’m honest, I’m too scared to rock the boat as this might trigger all sorts of things I dont want due to fear. I have read on the site that a few suffer from numbness and hot and cold feelings so it makes you feel this is a normal thing with monoclonal gammopathy of unknown significance (MGUS). I get too scared Erica to say too much, head in the sand again.
Hi @Annie666 I am so glad you have not got your head in the sand on here, it takes courage to post.
Fear freezes me.
I find that this is the one place that I really can be honest,
My husband has his head in the sand too.
You are part of our forum family now and I think of it as being enveloped in a cosy duvet, no sand here!!
Also if you would like to speak to someone the lovely Blood Cancer UK support line is there for you on 0808 2080 888.
Keep posting I would like to know more about you. Be kind to yourself
Hi @Annie666 and @Swara ,
I also have monoclonal gammopathy of unknown significance (MGUS) and on watch and wait every three months. I have numbness in both feet and parts of my lower legs which I have been told is anything except the monoclonal gammopathy of unknown significance (MGUS), as it’s supposedly not symptomatic. However, I’m not convinced it’s not part of monoclonal gammopathy of unknown significance (MGUS) and I now have nerve pain over my sacrum which is a real pain in the backside, literally? 
So …I can sympathise with you as I have all sorts of odd things that happen with me that can’t be put down to anything else.
Sending a hug to you both and hoping your next tests are good.
Alex x
Hi, my symptoms appeared just before I was diagnosed, mainly the numbness. You mentioned the pain in your back, I don’t have pain there but when I lie down it feels like I have a small rock in my lumbar region though nothing is there, its a sensation, very odd. I suppose its hard to say what is connected to monoclonal gammopathy of unknown significance (MGUS) and what isn’t.
I hope your next lot of results are good, its a worry while we wait to find out I know.
This site is very good for help and advice. Good wishes to you.
Hi Erica. Yes I can be honest on this site and say how I’m feeling. My hubby is the same as yours, head in the sand. I expect you have had nineteen years of tests and worries so you really do know how we all feel and its so good of you to take time to support us. I’m not too bad at the moment as my next bloods seem way off in December along with my next cystoscopy so I can more or less put them to one side until December creeps closer. My haematologist told me I have no immunity history at all due to monoclonal gammopathy of unknown significance (MGUS) so I’m wary about being in crowds though he didn’t tell me to avoid them. I think this is something I will have to try and bring up next time I speak to her, if I can dig my big girl pants out. Thank you all for just being there, it is so much appreciated.
Oh @Annie666 I have to put my big girl pants on every time I go for an appointment and write all my symptoms, fears and questions down and even after 19 yrs I get anxious before and during all tests, results and appointments.
I am sure my emotions have been on high alert since I was diagnosed. I can cry at the least thing and I can have conflicting emotions at the same time.
It sure is the support of this forum that has got me through this by realising that I am not the only one.
Please do keep posting and be vrry kind to yourself
Hi @Erica ,
Just reread your last post about the anxiety around tests, appointments and results. I think it can be the scariest part for many on here. Im often asked, when I have blood pressure checks, why my pressure is up and my hear rate fast 
mmmmm?
But more importantly, I wanted to ask how you are, how you really are, as maybe we don’t ask YOU and the other volunteers enough?
Thankyou for all that you do on here. You are often the first to respond and I hope someone is looking after you too.
Xx
Hi @AllyBally for asking how I really am, I have no secrets on here.
Yes, I am feeling OK as going for long walks, we have several parks round here and a lovely towpath, and it’s all free.
I play my music on my Walkman and I am in my own world.
My Chronic lymphocytic leukaemia (CLL) is very luckily stable, skin cancer is doing all sorts of different things and my scoliosis and osteoporosis is still there.
Life is good and I feel I am extremely lucky.xx
.
Hi @Erica ,
Lovely to hear. It sounds like you are very busy enjoying yourself…alongside your work supporting all of us on here. You have inspired me to make some changes.
Enjoy your weekend.
Xxx
Hi Alex (I think this is your name but apologies if not). For about 18 months now, might be even longer, I have had what I can only describe as ‘ants’ crawling all over my legs and particularly worse at night.
During this time things have developed and I have numbness in my feet and also tingling and pins and needles in my hands and feet too. I now have, on occasions, pain in my feet particularly when getting out of bed in the mornings but this does wear off after a while.
I would like to share with you a possible solution as it has certainly helped me. I have swollen ankles and since my monoclonal gammopathy of unknown significance (MGUS) diagnosis 3 1/2 years ago they have become more swollen and my hands too. Firstly, I see my nutritionist (also a lovely friend) who guides me in what I should and shouldn’t eat to assist with inflammation in the body, and this has reduced the swelling in my hands completely but my ankles still remained slightly swollen. Secondly, I have found pressure socks (cheapest on the market on Amazon just search pressure socks) an absolute godsend. You can wear them all day and night if needed but I find I don’t have to just when the feelings in my feet and legs become a bit too much. The socks, from my understanding help with neuropathy (which the GP diagnosed me with recently, just another thing to add to my growing list of things wrong with me! (Happy Hypo just call me!), they assist with the blood flow down the legs and into your feet. They have totally reduced my fat kankles which is amazing. I can only speak as I find and just wanted to share with you a very simple but effective way to help alleviate this problem.
Sorry for the long post but I do go on a bit sometimes. Why use one word when you can use thousands! I really hope this helps x
Thanks for the info Trish @Trish ,
Firstly, you don’t ‘go on’, what you have to share is important, for you and for others on here.
We’ve been talking on a different thread as well haven’t we and what you have shared has helped me greatly.
Thankyou.
Alex xx
I want to echo @AllyBally. I think you rants are useful. I suffer from swollen ankles and all sorts of aches and pains. I had a bizarre experience regarding my ankles. I got urine infection during the recent hot spell and was given antibiotics. The swelling on my ankles vanished but has returned now that the antibiotics have finished. I really don’t understand what happened, but it was nice seeing my ankle bones for a while!
Best wishes
Helen
Hello, I am just reading the forum and just read your message. I am 40 and discovered 2 years ago that I have monoclonal gammopathy of unknown significance (MGUS).
I suffer frequently for blooded infections and UTIs. I think that many viruses and bacterial infections can affect your immune system and cause even monoclonal gammopathy of unknown significance (MGUS). Things like lime disease or the virus causing mononucleosis.
I had 4 or 5 COVID vaccines and I had COVID twice and last time I was coughing with blood for week. My 90 years old grandma has much better immune system than I have. How are you doing?
Hi @Anna82 I have just read your post and the symptoms that you have had sound nasty and scary to me
Are your medical teams aware of them, their frequency and impact on your life?
If not perhaps it is an idea.
It is also interesting what you said about your 90yr old grandma having a better immune system than you, it’s the luck of the draw I suppose.
Really take care and look after yourself.