In simple terms you could say that osteopenia is to osteoporosis what MGUS is to myeloma.
My mother has osteoporosis which is how I know about the DEXA scan. Perhaps your GP could recommend some simple dietary changes, but always keeping in mind your kidney situation. I take a vitamin D supplement but, in the UK that’s fairly standard and most people have a deficiency of Vitamin D.
Free Light Chains are something to keep an eye on and they will be measured as part of any myeloma blood test. It’s always a case of looking for significant results or unusual or continuing changes.
I’m with Leicester Royal Infirmary and I feel confident in them even though I receive minimal attention. Reassuringly that’s what my figures indicate is appropriate for me, and long may that remain the case.
Last year I had what they term a ‘spike’ and the hospital reacted very quickly but it simply turned out to be an isolated result, but it showed me that they are there watching over my results.
Best of Luck with the BMB.
One quick point DoylerOz.
Have you considered a DEXA scan ? That measures bone density and seems appropriate considering you have mentioned fractures. Just because your symptoms haven’t led to a diagnosis it doesn’t mean that you are imagining them. Age, sex and other details determine if it’s appropriate for you but no reason you can’t discuss it with your GP.
I have been MGUS since January 2012 and the paraproteins have varied between 3.00 and 10.30 in that time. One similarity we share is that I have had kidney problems relating to kidney cancer in 2007 and I now have just the one kidney. One good thing is that the blood tests for MGUS include eGFR which is effectively a reflection of kidney efficiency though, like paraproteins, unless the figure is dramatic then it’s a matter of keeping a watchful eye on trends. My eGFR has varied between 54 and 73 in that time.
I have two blood tests a year for MGUS and I get the results by phone and this procedure is an indication that I am at low risk and thus a low priority and I am happy with that. I consider it the best of all worlds – low risk, I avoid treatment but I am still monitored.
One thing you could also ask about is free light chain levels as they can be a separate risk to anyone with kidney weakness. My figures have varied between 109 and 195.
At 64 I have plenty of aches and pains in joints and bones and I know that I have done serious damage to my lower back through sporting endeavours in younger days, but I think I can determine what is caused by the ravages of time and what isn’t.
At age 64 I have been diagnosed with MGUS for over 5 years. A diagnosis of MGUS isn’t a death sentence or a reason for undue pessimism. As much as I’d prefer to be without it, I do get regular blood tests taken which would highlight any unusual results. For me it is every four months as I accept that I am at low risk. Perhaps next time it will flare into active myeloma but no one can live their lives governed by what may happen.
Prior to becoming MGUS I lost a kidney to kidney cancer (unrelated to MGUS) and you need to avoid thinking all symptoms you have must be down to MGUS or myeloma. Strictly we shouldn’t have any symptoms at this stage, though I do have a reporting form from the hospital in case I do. After five years of steady results I have lost any obsessions I may have had initially. I have my blood test and they phone me the figures and I note them down. I have every figure since I began. I don’t actually visit the hospital which is good for both of us. The results I get act as my ‘comfort blanket’.
In younger days I was very active in high impact sports and my back is a wreck, so I couldn’t possibly put any discomfort or symptoms in my back down to myeloma. No one can foresee what lies in the future of any MGUS person and I wouldn’t want treatment until it is necessary.
I am in the ideal situation and I trust that you will be equally fortunate. I actually look forward to having the blood tests nowadays. At one stage I thought they were going to discharge me and then I had a ‘blip’ late last year, which turned out to be nothing.
It would be wrong for me to advise you or make any recommendation or diagnosis but my experience may give some perspective to your situation.
I am a male of 64 years age and I have been MGUS for over five years and I currently have blood tests every 4 months with a call call to confirm the results to me which I make a note of. I consider that I am in the lowest level of risk and I have not received any treatment and I am quite happy with this. Though the level of paraproteins is significant, what will always be of concern is when there is a steady and sustained increase over a period of time. MGUS itself is not considered a health risk, other than the risk of it developing into full blown myeloma which can only be ascertained by long term monitoring.
For you information the readings I take are IgA Paraproteins, eGFR, Lambda FLC and Kappa/Lamda ratio. The IgA in paraproteins and Lambda in FLC’s are specific to my MGUS. It’s handy if you ask for the largest paraprotein figure and ask them what type that is and the same for FLC’s (free light chains) and then you can speak their language in future. I have five years of figures.
Last year my paraproteins went up to 10.3 and the hospital got excited but I know other people here have had much higher readings. It seems that some other background tests came up as abnormal and, combined with the small spike, got them excited.
If there is a point to be made, it is that if you have significant symptoms and your MGUS is steady and, using the word designed to offend patients – ‘unremarkable’, then possibly the underlying cause lies elsewhere. The background tests apparently meant that I had a poor prognosis but, since my paraproteins has returned to normal, it was impossible to say to what the prognosis related.
Personally, as long as I remain MGUS, then if I have symptoms that I can’t put down to myeloma then I will go to my GP with it as a new ailment.
My last results were Paraproteins 4.1 FLC’s 157.6 Lambda/Kappa ratio 0.05 eGFR 63
I only mention them so that you have something to use as a comparison. They are ‘unremarkable’ but significant physical symptoms (which I don’t have) would make a difference.
I’ve been MGUS for 5/6 years and nowadays I get blood tests every 4/6 months with ‘virtual appointments’ which means that I get basic results by phone. I’ve had the odd small spike but overall I know that my results are low level and don’t merit more attention. I am happy with that and am thankful that I have been fortunate. I’m being monitored and can’t ask for more.
Having a diagnosis without receiving treatment can play with your mind, but actually it’s a good thing. If and when my time comes I doubt that treatment will be nice and it’ll be a sign that the illness is progressing.
Instead of dreading results I look forward to learning that I don’t have anything to worry about.
I wonder if it’s not so much a different method of measuring pp’s but more a different way of interpreting and reacting to changes in results. Just something to consider.
Nothing wrong with a little healthy hypochondria.
I’m no expert but the subtle but important point is that your results are referring, I presume, to healthy immunoglobulins whereas in this condition (MGUS/myeloma) the immunoglobulins being produced are clonal or faulty, and the risk is that their proliferation will harm other organs and people’s immune responses.
From the conditions you mention I assume that they were looking for evidence that your immune system was under stress, whether those figures you mention show this, I cannot say. Presumably as nothing happened, in the famous medical expression designed to annoy any patient, they considered that they were ‘unremarkable’.
I’m not dismissing your concerns or your illness, as all of us experiences that. I simply hope I am leading you in the right direction. It’s very easy to lack a full understanding of blood results even for experts.
As regards abdominal/bowel problems my own belief is that they won’t consider surgery unless they have clear evidence from tests or imaging what and where the problem is because it’s so easy to do more harm than good without a clear goal. In other words they won’t go on a hunt for the problem through surgery unless your life is at risk. Creating scar tissue inside the abdomen can cause problems worse than the original problem and I have personal experience of this.
Hello Marian.
It does seem strange that you have paraproteins so high, and increasing, without more intensive investigation. In my case with MGUS and an increased reading of something like 10 they called me in unexpectedly, which caught me unawares. It turned out to be nothing but your results are very high.
The term ‘asymptomatic’ is interesting as I would normally think of physical symptoms when it’s mentioned but I understand that it could also include other blood results, but I always take the paraprotein level as the baseline marker for myeloma activity (or flc’s if it’s free light chain myeloma). I know they perform broad range blood tests looking out for increased levels of calcium (bone damage) and eGFR (kidney damage) and many others, but it would be nice for you to know the reason for holding back on treatment.
I doubt you can have ever-increasing levels that won’t eventually do you harm, but maybe they want to know where it is affecting you/will affect you, before they treat it. From my own non-myeloma experience I know that sometimes the treatment can be worse than the ailment, but knowing their strategy would be useful to you.
Hi Loulou.
To my untutored mind I would have thought that corneal involvement is unusual and indeed so is the fact that they discovered it at such a young age. The rule is that myeloma can affect any organ except the brain, but even though the normal route of affecting the bone is bad enough, the possibility of it affecting the eyes would concern a lot of people. Normally you wouldn’t be checked for myeloma at that age, so I presume they discovered it in the corneas after you had symptoms and they worked their way back to make the diagnosis.
It does seem a little strange to have conceded organ involvement and still restrict the diagnosis to MGUS. It doesn’t seem logical to be producing m-proteins to a level affecting an organ enough to require treatment and then downplay it, but I’m no expert. I am at the MGUS stage and recently the Consultant appeared to be writing my obituary, and it took me a few weeks to work out why. It seems that I may be dying of something else, they don’t know what, but my MGUS is fine. Myeloma can be a challenge even for the experts and sometimes we expect too much, not to say we shouldn’t be inquisitive about our results and what they are.
The base line test is the measurement of m-proteins but you may have none at all but elevated levels of free light chains. They will also be noted on your blood results and the kappa/lambda ratio is a prognostic guide, so the textbooks say. If it falls outside the normal range it is not good, but mine has always been that way on the other side. With this illness it will often overproduce one type of kappa or lambda flc’s in excess and when the ratio is outside normal limits it shows this. I always note my free light chain level as well as myeloma proteins when I have my blood tested. I also get the kappa/lambda ratio though I know that will never be within normal limits and my eGFR which is a measure of kidney function.
Many thanks for your reply Debbie.
I have no problem with the hospital, doctor or the diagnosis of my low level MGUS. I only mentioned it because it was an interesting anomaly and one that will have future implications for me, if only meaning that prognostically they are of no value in my case.
The more relevant point to me personally, that isn’t within the scope of haematology or the condition for which I am an out-patient, is whether or not it refers to something else. I don’t for one second believe that I am going to discover anything that will be diagnostic and, many of the alternative conditions for which these tests are relevant, are also haematological but the tests are indicative of something. For many years I have had a condition for which I have never received a diagnosis and which, though unspecific, can make me feel very unwell. When I had my blood test I was having one of those spells.
I’ll get details of the level of the two results which are abnormal but not quoted simply so that I can track them in the future. Until whatever it is afflicting me reveals itself, I’ll just have to put up with it.
In my humble opinion the worst possible thing is to remain indoors facing the same four walls day after day. My mother is 93 and severely affected by osteoporosis and for her benefit, and mine too, I take her out once a week to a stately home or similar attraction. She has a collapsible wheelchair, that is necessary for any long walking stints, but I think such trips make a massive difference to break the cycle of thinking about nothing but the illness affecting and restricting you.
Just to continue the confusing status of MGUS I’ll just mention that I was asked to call in at the hospital over my results and obviously they were significantly changed. At that time I felt no better or worse than usual. However since then I have endured a horrific cold virus over the past ten days. It’s like being in a tumble dryer with symptoms regularly coming and going and repeating – sweats, sore throat, sinus pains, congested lungs – not very pleasant. The question is whether this is a result of my test results or the cause of them. It did puzzle me that the doctor asked me if I was HIV positive, which is highly unlikely, and it suggests that there were other abnormalities in my results.
The results that were originally abnormal were too far in advance of my appointment to represent a forewarning of the impending virus.
As if Myeloma and amyloidosis aren’t enough to be concerned about, I have read that paraproteins can also be a ‘marker’ for lymphoma, which is more connected with immune deficiencies. The doctor didn’t mention anything, apart from the HIV question, and that’s understandable from just one set of results.
My GP can’t do much about a virus but if it creates infection in my lungs or sinuses then I’ll see what she can do. Hopefully it will have cleared up before my next blood test.
Hi Heather.
I have always felt that my immune system and reactions were unpredictable and sometimes absent or over reactive. I gave up having winter flu jabs after I had a particularly bad reaction some years ago and it was undoubtedly down to the the vaccine. More recently, since Haematology have become more excited about my results (which I have recorded elsewhere in the forum), I have suffered an incredible reaction to an ant bite. In the end I didn’t even go to my GP though I was tempted to show her, out of curiosity but, I was concerned that I might be despatched to hospital. Knowing that I react badly to insect bites I was dressed as if entering Chernobyl but somehow it evaded my precautions.
The past week I have been enduring a terrible cold and, at my worst, I can just go through a never-ending cycle of colds. Since this is an illness that affects plasma cells which form part of our immune system it seems inevitable that it will have an affect on our ability to handle illnesses/insect bites and, though I was not that excited by my latest results, my body appears to be telling me a different story.
The thing is that Haematology appear to me to base their actions almost exclusively on blood test results unless there is an extreme symptom of one sort or another. My next appointment is a month away so I won’t burden anyone with my symptoms unless they become considerably worse, though I will mention it at the appointment.
By the by the doctor did ask me if I was HIV positive at my last appointment, which did catch me unawares but I wasn’t offended. I’m more likely to have Martian DNA than HIV, but it does suggest that were seeing or looking for some immune system defect.
My concern is receiving treatment that will make me feel ill, when I am already feeling unwell.
Just to clarify something, in MGUS paraproteins are a marker for all patients and the kappa/lambda ratio is also relevant to everyone. I have had a kidney removed and I pay particular attention to the eGFR figure which is a measure of kidney efficiency because that is an organ that can become affected.
On your tests IgG relates to one particular free light chain which is the one particularly affected in my MGUS. It is useful to check whether yours is the same as mine or something different. There are several different types and are all are measured in the blood test and you just have to see which is largest on your test report to know which one applies to you. When you know which one of yours is particular to you that will be the figure to look at each time you get a test. Having said that your FLC’s may not be affected significantly.
You could try asking your GP for a copy of the blood test results but, even if he refuses you can still get them by making what is called a Subject Access Request and it’ll cost just £10. It can take a while but at least it gives you some sense of empowerment having something on paper.
I always aim to make myself the most pleasant and charming patient a doctor/patient has had that day, but I also make sure they know I am not a helpless and clueless victim.
I have managed to find the North Devon NHS referral guidelines
http://www.northdevonhealth.nhs.uk/wp-content/uploads/2014/06/MGUS.pdf
Obviously those guidelines can’t possibly be anything like those in Leicestershire and it seems strange that they haven’t included bone pain as a risk factor.
It does put greater emphasis on your blood results and knowing what they are and how your PP levels are changing.
