Hi Laura. Thank you for your reply. I tried to reply earlier but I did not realise that I was logged out hence was not able to reply straight away. Silly me.
You are indeed very young for monoclonal gammopathy of unknown significance (MGUS). There are some youtube stories ( mainly from USA) where people share their stories of monoclonal gammopathy of unknown significance (MGUS) discovered at a similar age as yours.
And yes, I was 38 when I was diagnosed.
I’m having a constant pain in my back, ribs / kidney area.
I had a chest MRI. Nothing was found. But I need perhaps a CT scan as it is better for assessing this area.
I had a telephone consultation about my last blood tests with ‘my’ hematologist.
My monoclonal protein dropped a little but free light chains level suddenly sharpy jumped and the ration of lambda to cappa increased by a lot. They still think it is stable.
Ah and my Creatinine increased quite a lot and is at the border line and the other kidney test is out if norm. Basically all my results are steadily worsening.
The hematologist thinks that the rib/ back pain in not related to monoclonal gammopathy of unknown significance (MGUS) or MM but will set up a face 2 face appointment around march. on NHS at the hospital I only had an x-ray and it is not as accurate as CT.
I feel lost as I know that the pain is caused by something bad. And do not know what is causing it.
The longer the monoclonal gammopathy of unknown significance (MGUS) is at the stable level the better the prognosis.
The lower the ratio of free light chains the better. The higher the ratio, the more likely it is getting closer to MM.
What is your paraprotein level?
It is worth mentioning that the paraprotein can be detected in people with some autoimmune diseases or after the strong infections.
As my kidney function is dropping a little and I have some pain in my joints ( in my both feet) I am thinking about doing some blood test for some autoimmune diseases too.
I apologise for my chaotic message.
It is a strange disease. Waiting and knowing that most likely the illness will progress.
It is nice to chat with people here.
With regard to your bladder infection I can recommend some cranberry pills from Holland and Barrett. I think I would have sepsis without them by now!
Although with a risk of MM any supplements with vitamin c need to be taken with extra care to protect the kidneys.
Look after yourself and listen to your body.
Regards
A.
I wanted to add that I am extremely prone to bladder infections.
And I got immune to some antibiotics.
I have been taking one type of those cranberry pills I mentioned and they helped me to recover from the infection when I seen blooded from my urine.
Few years ago during the COVID pandemic I was trying for a second baby and was having some insemination at the fertility clinic and after one of the procedures I developed a horrible UTi. And those tablets saved me.
Hi 2DB.
Thank you for sharing more about your story.
I do worry about my kidneys to.
I hope you are doing well and staying strong.
I recently received some test back and my kidney results are gradually getting worse and light chain level is increasing.
Does anyone know what “mostly reactive” means with a recent monoclonal gammopathy of unknown significance (MGUS) diagnosis?
As with a lot of you, I’ve been recently told by my GP that I have this condition. Although he said, I have an increased MM risk, he told me the chance of it developing into something nasty is just one percent per year. But, as I’m relatively young (51), I guess my risk is a bit higher as it’s been discovered early on (as there will be a longer period….I hope……of constant monitoring).
He also used a skin cancer analogy, saying while you might see an unusual mark on your skin, there’s only a remote chance of it transforming into MM.
While I’ve been led to believe the odds of um monoclonal gammopathy of unknown significance (MGUS) transforming into MM is quite small, I still
feel unsettled as I’m thinking “what if” dominates my thinking
No symptoms whatsoever. It was only picked up following a osteoporosis check-up.
An endocrinologist said that although my Kappa free light chains are “a bit elevated”, there’s no need for concern because even the marker is a bit higher than the set guidelines, it doesn’t mean I have a serious problem.She suggested seeing a haematologist, but the GP doesn’t think it’s necessary.
Any advice anc response to my question would be. Immensely appreciated
Hi @James1, a great big welcome to our forum, I am glad that you have found us.
I am no good at medical queries, but I was also diagnosed by another hospital specialism.
It seems that you have lots of concerns and questions forming in your mind.
I always like to write down all the things I want answers to and I have learnt to be pleasantly assertive and get answers before I leave.
I have another blood cancer, but I am so grateful for being on constant monitoring/active monitoring or watch and wait too.
Perhaps be aware of the emotional and psychological impact of a diagnosis.
I attach some information on the Blood Cancer UK website for you on monoclonal gammopathy of unknown significance (MGUS) MGUS – monoclonal gammopathy of undetermined significance | Blood Cancer UK
I hope others will be able to share their experiences.
The Blood Cancer UK support line is there for you on 0808 2080 888 if you would like to talk to someone.
Please do look after yourself and keep posting, I look forward to hearing more about you.
Mostly reactive in my thinking could mean that it appeared after a test you had so reacting to a test rather than for monoclonal gammopathy of unknown significance (MGUS) itself
I could be wrong so don’t quote me
I would imagine now your gp is aware that they may suggest monitoring but that would be a conversation to have with your GP
I will link the GP guide so you have an idea what the GP would do and you can monitor yourself.
My suggestion is that you live your life be aware of any changes and report them
It quite natural to think what if. I always say have these thoughts but don’t stay there life is for living
May you continue to be slightly monoclonal gammopathy of unknown significance (MGUS) for years to come
Thank you for your reply and kind words, they are very appreciated.
I am sorry to learn that you’re unwell. It’s never nice to get a not-so great diagnosis, especially when you’re feeling ok. This monoclonal gammopathy of unknown significance (MGUS) stuff is dominating my thinking, and it’s driving me a bit stir crazy. I’m seeing my GP on 2/2/24 and will be definitely asking more questions.
As with Erica, I’d like to acknowledge your response and general kind wishes.
I’m going to my GP soon, and rest assured I’ll be asking questions because this is making me a little “nutty”. I’ve just re-read an earlier kappa/lamna ratio result was 1.5; my understanding is the range only goes to 1.7. Understandably, I’m concerned.
I like my GP but he often speaks quickly and provides a lot of information. Keeping up can be difficult.
As mentioned previously, he didn’t seem to think I had much to worry and tried reassuring me as such. It hasn’t worked. Let’s hope for a better outcome.
Thanks for the additional information sent. I’m actually an Aussie, not that it makes any difference.
Hi @James1 great to know you are in Aussie.
Just to let you know that different countries might treat or not conditions differently, use different parameters and might use different treatments.
If your GP speaks quickly you might ask them to slow down as you are taking notes.
Be pleasantly assertive and ensure you get answers before you leave.
Your feelings and thoughts are natural, be very kind to yourself and please do let us know how you get on.
Hi @James1
I can understand it’s making you feel a bit “nutty” it’s the fear of the unknown isn’t it
Having a look at a file on a myeloma forum kappa/lamda is 0.26-1.65 range yours is still in range at 1.5
For contrast mine is 2.65 but I’m in a very good partial response to my second transplant for my myeloma.
When you visit your GP ask them if you can record the appointment as you can’t take in the information very well.
I echo @Erica make a list of questions even the scary ones and maybe email them to your GP before your appointment
Maybe ask him to copy and paste and reply in blue
Print two copies out to take with you in case he hadn’t had time to respond.
Hi Erica. How are you doing now. Are you back on track after your tests and problems before Christmas? I do hope things are back to normal for you, well our normal if you know what I mean.
I had my blood results a few days ago, no change in the monoclonal gammopathy of unknown significance (MGUS) thank goodness but there is a problem with my red blood cells appearance, haematologist said they were thickened. She informed me I had the same problem in another unrelated blood test back in 2017 but it righted itself so its a wait and see again. Also i now have a Vitamin D deficiency which is easily solved with tablets, no worries. I had my cystocopy for my bladder cancer at the beginning of December to check on a lesion which hasn’t changed in appearance but he has found another lesion. It is very tiny at the moment and as i have had ten or eleven operations on my bladder he doesn’t want to operate unnecessarily as my bladder still functions normally but too much interference can alter that. So, I’m back to three monthly checks on my bladder, next due beginning of March. Next bloods due in six months again which makes me think she isn’t too worried about my red blood cells at this point. So thats me up to date, just need to know that you are doing ok too. Thank you for all you do, helping us all stay on an even keel.
Hi @Annie666 it sounds as if you are being well and practically looked after and also how we are very complex beings.
Thanks for checking in with me.
I seem to coincidently be under rather a lot of ‘ologists’ at the hospital at the moment.
I am being well looked after and still having tests, but seeing the GP this week and cardiologist next week so hopefully will hear more then.
I am still walking, but less distances, and doing Pilates.
Yes, we all need to look after ourselves.
Yes, only we can do what needs to be done, it can be quite a lonely road even if we do have family. It can be a hard slog and there are times when we just wish to be left alone when those hospital letters pop through the door, but you are right, we are being well looked after and I know if it wasn’t for my urologist, I wouldn’t be here, so on we go.
I expect you are doing the same as me, rooting out your big girl pants and getting on with it though it’s hard going at times. I wish you well and if you don’t mind, I will check in again and see how you are getting on. Thank you for all your help past and present.
Hi @Annie666 yes, we do just get on with it and I can sometimes feel lonely in a crowded room of family and friends.
Don’t you worry my big girl pants are always dusted off and ready!!!
I will let you know how I get on.
Look after yourself as well as you are looking after me!!
Hi @Annie666 Just to let you know I saw the Cardiologist yesterday and I have an irregular heartbeat, which I knew, a heart murmur and leaky aortic valve. My ECG’s also show a blip so more tests due. Thanks for caring.
I was wondering how you were getting on, I don’t like to ask too many questions as its purely a personal thing as to how much a person wishes to reveal but I thank you for letting me know. Hopefully when your tests are complete they will be able to regulate your heartbeat and help with the other issues. It can be a worrying time going through all these tests as you know but I do wish you well.
My latest news, i had the phone call then the letter from my haematologist yesterday, i have now been diagnosed with polycythaemia, I’m making too many red blood cells which makes my blood too thick. In turn this can affect my breathing apparently and puts me at a bigger risk of stokes and DVT…wonderful! Treatment can include drugs like Interferon and also removing blood via IV but I am not at that stage yet, just a case of, lets see what next lot of bloods reveal. monoclonal gammopathy of unknown significance (MGUS) results remain the same thank goodness.
Now I await the next appointment for my next cystoscopy to see how the two bladder lesions are doing, appointment due in March. I’m just recovering from a bout of sickness and diahorrea, starting to feel better now.
I do hope they sort you out Erica and I also hope you feel ok in yourself, sounds like you are certainly going though a few tests but better that so they can do their best for you. Its a long road but we have to travel it don’t we?
Oh @Annie666 it is a long and winding road we travel.
How are you feeling about the motorway you suddenly find yourself on?
Be kind to yourself it is a lot to take in
