MGUS (monoclonal gammopathy of undetermined significance)

Hello, I thought as ‘MGUS’ is a commonly searched phrase on the forum that it would make sense for there to be a space for those recently diagnosed with MGUS/living with MGUS as while there over 4000 diagnoses every year, people can feel alone living with it and the worry that follows as a small percentage each year will go on to develop a blood cancer such as myeloma or lymphoma.

Do you have MGUS? Are you worried about the possiblity of it becoming a blood cancer? Have you had much support from your GP, friends & family?

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I was diagnosed recently with IGg Lambda

Hi @Joe-Bucko - I just saw your post in the introductions thread around the cause of some of the symptoms you’ve been experiencing, particularly the tingling in the hands/feet which is a common symptom of MGUS, as you may already be aware of. Myeloma UK have an infosheet on peripheral neuropathy that although aimed at myeloma patients, may also have some useful and reassuring information and tips for you too? https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-Peripheral-neuropathy-Infosheet.pdf

Your post previously mentioned not knowing what questions to ask - I think firstly its really important for you to feel you understand MGUS, what it is and what happens next. Our factsheet may be a useful starting point https://bloodwise.org.uk/sites/default/files/documents/Monoclonal%20gammopathy%20of%20undetermined%20significance%20MGUS%20fact%20sheet%20August%202017.pdf

Do you have a plan for your next blood tests going forward?

Hi.
Just introducing myself and giving some info.

My world turned upside down in June of 2018. I had a pretty routine operation to laser a kidney stone. The following day I was at home and at around 7pm, I thought that I felt tired, I thought it was due to the anaesthetic, so I went to bed early.
My daughter woke me up at 11:30am on Sunday, but I couldn’t keep awake. I couldn’t stay awake. At 5pm on Sunday, she took me to our local A&E department.
Between parking the car and the A&E department, I’d forgotten my name and date of birth and how to walk.
I was eventually diagnosed with Sepsis and put on gentamicin as I’m allergic to penicillin. My entire body felt like it had been beaten, I developed a headache, which I still have, I have a really bad short term memory now and a severe case of tinnitus. My balance is pretty ropey now too. I also have numbness/tingling in my fingers and toes.
Another thing that happened after the sepsis was high blood pressure. After numerous ECG’s my heart was ruled not to be the cause, so my kidney’s were checked next. After my blood work was reviewe by the Nephrology department, I was notified that I had an extra protein present, which needed to be monitored.
My kidney function was ok though.
I was referred to haematology, where I was told that I had MGUS IGg Lambda.
Now I’m at a bit of a loss has to what questions I should be asking.
No one can tell me where my symptoms are coming from. Gentamicin can give you similar symptoms as MGUS. I have had further tests carried out for my tingling/numb fingers and toes, but they have come back normal and after my last GP visit it was put down to nerve damage, which makes me think that it’s the MGUS.
If anyone can help, it would be greatly appreciated.
Many Thanks
Joe

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Hello Joe, so sorry to hear of your mgus diagnosis I assume you are now on watch and wait and not receiving active treatment. This brings with it a unique set of challenges around coping with uncertainty. It’s important to remember that should your mgus ever transform in myeloma, which is far from certain, you will be in the era of groundbreaking treatments and should remain positive .
I’m sure having sepsis was a very scary experience and has left you with a certain degree of anxiety so it’s important to talk to your gp about any unexplained symptoms you have. My advice would be to discuss your feelings about your diagnosis freely here in the community you will not be judged as we are all walking the same path.

Thanks Alfie for the advice.

I do have a unique way of looking at things, this is down to my medical history.
I suffer with Medullary Sponge Kidney (MSK). My kidneys look like sponges and contain hundreds of kidney stones, I’m in and out of hospital frequently with infections and stones, so I’ve learned to not look too far into the future, I suffer chronic pain daily. All of this has made me quite open and unaffraid to speak openly.
I do however have a very inquisitive mind and like to know what’s happening, why has something happened and what can be done.
I do seem to get things where little is known, so it’s that what frustrates me.
So I suppose it is down to uncertainty.
I don’t think that me being an engineer helps. I deal with problems every day, so I investigate why something has happened and how can we fix it.
I do really appreciate the kind words though

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I am so sorry to hear of your problems with your kidneys, chronic conditions like that are very draining.
I know what you mean about being analytical because your an engineer, my husband of 35 years is a computer boy and approaches all problems on the basis of finding a practical solution and leaves all the crying and emotional stuff for me L.O.L
I’ve lost all kidney function so I’m on dialysis which sounds bad but it’s better than getting constant infections.

Joe,

Sorry to hear you have been having such a rough time. I have Myeloma and some people who get MGUS go on to develop Myeloma, though not all. I was diagnosed 13 years ago and have been in remission fir 12. However the Myeloma did affect my kidneys and I have been on dialysis for over 10 years. Although I have coped well with the dialysis (I am on Peritoneal Dialysis) and do it at home every night I’ve had the occasional blip. At one point they thought I had peritonitis and put me on gentamicin. I was fine on the treatment but a few days after completing the dose I developed severe balance problems. Appparently it is a known side effect of the drug. I was referred to an audiologist who gave me exercises to do which as helped. It is still not perfect but is much better. I do tai chi and the audiologist said that was one of the best things I could do. So if the balance does not improve ask to be referred to a balance clinic.

I don’t know enough about MGUS to know if this can also cause balance problems. I was also on thalidomide and that caused the tingling but I have got used to the tingling.

Anyway hope you get some information from your consultant but worth asking them if they think this was caused by MGUS or by medication.

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Hi Joe
I was diagnosed with MGUS IgA Lambda back in 2014. I also get numbness/tingling in my hands and feet. The Haematologist said that the paraprotein in the blood could cause this tingling and numbness. I was also told that MGUS is symptomless but I have constant pain in my arms and legs and also my hips and back. I have now progressed to smouldering Myeloma which the Dr said is rare. I am not on any treatment yet as it is in early stages.
I would expect that you will be monitored with regular blood tests at least 6 monthly or even 3 monthly at first as I was. You do need to tell them of any new symptoms as well. I hope you have been allocated a Clinical Nurse Specialist who you can contact if you have any concerns or questions.
I know you must be worried but do be careful which websites you check out for information. Blood wise is excellent for all aspects of information and everyone is very supportive.
Take care
Kind regards
Yvonne

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Morning @Joe-Bucko - I have moved some of these posts from the introductions thread as I think it will be really valuable to anyone else newly diagnosed with MGUS. Thank you to you all for sharing your experiences, please do let us know how you are getting on.

How are those of you living with MGUS getting on? Do you have any advice or suggestions for those newly diagnosed and who may be struggling with fear and worry?