[madisonParticipant]

Firstly, hello to everyone and apologies if you think I am posting this to the wrong forum but I am overcome with anxiety not made any better by Dr Google (I know why did I go there).

I am a 56 year old female, diagnosed with osteoporosis in January of this year, no real systems only found by chance. (I had just gone on HRT). I was referred to a rheumatologist and I decided that at this stage I did not want to have any treatment. I had blood and urine samples taken at the time. I am otherwise fit and healthy.

I have just received the results via a covering letter which state: serum shows a small IgM kappa paraprotein with normal background immunoglobulins. Urine showed two slightly strong kappa zones. This could also be Bence-Jones protein. Tests to be repeated in 3 months in view of my osteoporosis.

I then did the dreaded Dr Google Search and this has sent me into a complete mess. I am feeling really anxious and from feeling fit and well on Friday I just feel so overwhelmed. I also seem to have mild backache now and then (only since I received the letter). The thought of having to wait 3 months with no real information scares the life out of me.

I had to request a copy of the results which I have since received. I do not really know how to interpret these.

Paraprotein 3.0g/L

I am waiting for a GP call to go through these.

I am wondering if any one can offer some advice of words of wisdom so I can get everything in proportion. At the moment it is all I can think about and no matter how hard I seem to be trying my mind keeps going back to this. Do you think it would be worth following up a private consultation. At the moment the 3 month wait for another blood test seems unbearable.

I hope this does not come over as selfish as I know many are having their own battles.

Thank you

[mulberryParticipant]

Hi Madison, this forum is just the right place to ask such questions, we have all been through the terror that you are currently experiencing.
We are not drs or medically trained so my information is from a patient’s perspective.

It is not ‘normal’ to have any paraproteins in the blood. Having said that, it is becoming increasingly apparent that it isn’t rare either, it seems 5% of the population, rising to 12% of over 80 year olds have a low level of paraprotein in their blood which usually remains stable over time. This condition is called Monoclonal Gammopathy of Unknown Significance, or MGUS in our jargon. A level of 3g/l is small, and would put you in that category. (Any level under 30g/l is usually called MGUS, unless the patient also has high calcium levels, anaemia, kidney problems or bone damage- ie clinical features)
Why you are being rechecked is because it is thought that everyone who develops one of several blood cancers, inc Multiple Myeloma will have had MGUS before developing the cancer. MGUS itself isn’t considered a cancer, as the cells themselves have no function. It is normally controlled by the immune system, which is able to keep the cells at a low, stable, inconsequential level.
However for a small proportion of us, our immune systems fail to keep the paraproteins (non functional immune cells) in check (usually due to chromosomal mutations we’ve acquired) and the sheer high level of these non functional cells damage organs and our bone marrow.
Myeloma isn’t usually a fast developing cancer, paraproteins tend to creep up (to begin with anyway,) so 3 monthly checks- or less often if the MGUS is stable over time- enables the small proportion (10% a year) who do develop myeloma to be caught at an early stage before organ damage.
I hope this is helpful. It is always shocking to be told that you have such a problem, and as you say, Dr Google tends to lead us down the worst case route rather than the most likely one.

[madisonParticipant]

Hello Mulberry

Thank you so much for your informative reply it certainly has started to calm me down and put my mind at rest and your information was very helpful. I am sure I will have lot of questions as my journey continues. I can honestly say this site and forum is the only thing keeping me sane at the moment. I have a call with my GP tomorrow to discuss. I suppose my other concern is the osteoporosis and I do feel I have slight lower back discomfort. Not all the time but as I said before it might be the stress of all this. I will mention this to the GP. Thank you once again.

[richfsModerator]

Hi Madison,

Thank you for posting on the forum, it is totally the right thing to do. As Mulberry says, we’ve all been thrown into the horror that you find yourself in. I echo everything else that Mulberry says as well (she’s very wise!) Whilst the 3-month wait may seem excruciating, your paraprotein levels are relatively low. Mine was around 39g/l at diagnosis and I was experience a lot of rib pain and some back pain, I was male and 44 years-old at the time, I’m now 47 (and still male!)

Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

Three quick things I’d recommend:
1) Do phone the Myeloma UK Infoline, they’re very helpful and happy to talk – 0800 980 3332
2) Bisphosphonate treatment is common for osteoporosis. The same treatment is very effective against bone disease caused by myeloma. If you’re not on that treatment, I’d recommend talking to your rheumatologist or doctor about it.
3) When you speak to your GP, ask them what your white blood cell count is. A low WBC is another indicator of myeloma.

The mind is very powerful over the body, we ignore lots of little aches and pains until we’re got a reason to focus on them, so your lower back pain may be due to osteoporosis, or just general aches and pains.

As well as MGUS, there’s another ‘level’ of myeloma known as ‘smouldering myeloma’, a friend of mine was diagnosed with this 3 years ago and her paraprotein level has been stable around 28g/l for that entire time.

I don’t think there’s any need to seek a private consultation when your paraprotein levels are so low, it’s very likely to be MGUS and giving you no ill effect (apart from some stress!), 3 monthly checks are normal and you are a long way off being diagnosed with myeloma. You’ll find plenty of people on this forum talking about how even a diagnosis of myeloma isn’t the end of the road for them, there are lots of effective treatments.

Let us know how you get on with your GP.

Best wishes,
Rich.

[richfsModerator]

Hi Madison,

Just checking in to see how you’re doing, how did you get on with your GP?

We’re here for you, don’t ever hesitate to call out for help, advice or a chat!

Rich 👍

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