MGUS / Myeloma tests and symptoms

Hello Everyone,
Would you mind sharing your stories about your symptoms which you had before you were diagnosed with Multiple Myeloma please?
I am 40, 2 years ago I was diagnosed with monoclonal gammopathy of unknown significance (MGUS).
My problems started after my second COVID Pfizer vaccine. Where I developed hives after the vaccine. I had them for months. After 2 months of begging GP for some test and help (Antihistamines didn’t work for a long time) .I went to see a privet doctor and this is how I discovered that I had monoclonal gammopathy of unknown significance (MGUS).
Some doctors think that the COVID vaccine activated my immune system in a bad way hence I had those chronic hives and perhaps monoclonal gammopathy of unknown significance (MGUS)? I will probably never know if the monoclonal gammopathy of unknown significance (MGUS) was from that or not.
Anyway, 8 months ago I got a very sharp pain in my rib/ kidney area.
The pain continues. I informed the hematologist. And he sent me for a chest scan 4 months ago. I am not sure if it that particular rib is even visible on the x-ray as I only had telephone consultations this year. They did not see anything from the scan. And that’s it I was told that something else was causing the pain and that I should contact the GP. But my GP practice is very bad.

I feel the pain most when I lay down and touch the chair with my back. Although now it feels like I have it with every move.
Sometimes I feel that it is maybe around or in my kidney.
I did a private ultrasound of the abdominal area. Which came back normal.
But pain is getting worse and worse.
I know there are other tissues there around my pain and other bone cancers which may not show up on the x-ray.

I was advised by a private consultant that I can have a CT scan or perhaps an MRI with a contrast.
I did some blood tests as this is needed before the MRI contrast. And from the tests I found out that my liver function has dropped significantly since May.
I compared the results with my regular blood tests done by the hematologist.
I worry that either I have MM already all or something growing in my kidney.
I have a hematologists telephone consultation at the end of the month.
But I wonder if any of you has any knowledge on whether an MRI can show the MM?
I am not sure if they will even give me the contrast now. Overall I worry and not sure what other tests to do to discover the cause of the pain.
Ah and on top of that 2 months ago I started feeling pain in my foot between some joins and in bones.
But my GP had offered me an appointment in 8 weeks to discuss it all!!! Even though I said that I struggle to walk now.
I am trying to put a brave face and not worry my husband or my Mum. I have a young son and he needs me.
I worry that I left the pain untreated for too long. I assumed that the good x-ray was reassuring. But the pain is not Normta and not similar to any other pains I have ever had.

I forgot to mention that I have a IgA paraprotein and free light chains monoclonal gammopathy of unknown significance (MGUS). With every blood tests my levels are increasing. And from what I googled with light chains present and that type of the paraprotein I am at high risk of developing Amyloidosis or MM.

So to summarize my length and chaotic post please let me know what were your first symptoms and what tests have you done. Thank you.


Hi @Anna82 I am so glad that you have found us and the not knowing is scary isn’t it.
Thanks for writing such a detailed post.
I attach some information for you
MGUS – monoclonal gammopathy of undetermined significance | Blood Cancer UK
Myeloma | Blood Cancer UK
Blood cancer symptoms and signs | Blood Cancer UK
If you would like an NHS 2nd opinion you can ask for it.
Perhaps write your questions down so as you cover everything you need to.
I hope someone will be able to share their own symptoms, we are all very unique individuals with our own medical histories.
Please do keep posting and be ever so kind to yourself

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Hi Erica,

Many thanks for your reply. It is nice to have a platform to share the thoughts and find the understanding and help.
I may seek a second opinion, as you were suggesting.

I also found an interesting topic here on the travel insurance.
I am hoping to have the mri test done next week. Although the radiologist will decide whether it wil be done with the contrast or not.
On youtube there are some stories of patients with Multiple Myeloma and it is clear that this illness has many faces and can affect people differently.
Thank you again.

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Hi @Anna82
I have been living with myeloma since 2017
I have IGGK light chain myeloma with boney disease
I don’t recall symptoms apart from feeling tired and a painful knee and lower ache in my back after anything strenuous.
My myeloma was found when I was admitted to A&E with a gall bladder infection
I had severe anaemia and referred to haematology after being checked for bowel cancer as it runs in the family which was negative
My kidneys were on the verge of collapse but I have to say I had no idea as I had no pain.
My protein was 45 with light chains 1600

I know that lesions can be found on an X-ray as my second mum has been diagnosed recently with myeloma with fractures and lesions in her ribs.

It sounds like your having all the appropriate tests so far and scans

Bloods and scans will make up the overall picture of what’s going on they all go hand in hand

monoclonal gammopathy of unknown significance (MGUS) Diary

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This is a GP guide which will give you a good insight to what happens

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Dear 2DB,

I am sorry to hear about your illness. I hope you are in a remission and are doing well?

Thank you for all information sent. I found out more from those pdfs than I knew so far. Especially from the guidelines for GPs.

Thank you again. Best wishes


Hi @Anna82
I’m doing well and living my best life :slight_smile:

I’m in a very good partial response after relapsing and having second stem cell transplant in 2021/22

I’m pleased the info is helpful and you can arm yourself with some knowledge
Good luck with all your tests

Keep us updated
Always happy to answer anything that comes to mind if I can


Hi 2DB,

Many thanks for your reply. I am pleased to hear that you are doing well.
I am very very grateful for sharing your story and for your advice.

Be safe and look after yourself.