Personally I didn’t feel any pain at all, just a strange numb tingling sensation but I have no doubt that it can affect different people in different ways.
I’ve mentioned it before yvonnese, but you are legally entitled to know your medical results. There is no arguing with that and, purely because I had a terrible experience of having information withheld from me when I had kidney cancer, I am not prepared to be fobbed off. I’d just ask the haematologist at the start of each appointment and have your pen and notebook ready. I only require four figures and at an appointment, the haematologist should have the information at their fingertips. Keep calm and be insistent. My last results showed an improvement and so I’m not bothered about the next results.
Purely from the fact that you are being seen at such short intervals suggests that your illness is more advanced than mine, and my own need to know is determined by how high my readings are. It also helps the patient to know if any symptoms they are experiencing may be related to deteriorating results. I have plenty of symptoms, most of which I believe are irrelevant to myeloma. If my results suddenly deteriorate then it is more important that the haematologist knows what they are.
Of course, if you know your results, it also enables you to discuss them and get some idea of the hospital’s strategy for dealing with myeloma – trigger points, tests, symptoms etc. I get much more out of the hospital being charming and polite, and knowing exactly what I want from the appointment. The appointment is actually for YOUR benefit and you shouldn’t leave it without being better informed.
If they don’t inform you of results there are simple bureaucratic processes that will get you what you want.
yvonnese – you have the right to know the result of any medical test performed on you and it is also NHS and Department of Health policy, and also government policy too.
I have had problems in this area, and my problems have been with LRI Tony, and it is only recently that they have begun sending me a copy of the letter to my GP informing me of results. It nearly ended in court and my experience with kidney cancer and not being informed of things was devastating and I could easily have lost my job over it and died. This is why it’s not a matter for discussion with me, because it is also a legal right.
Having said this, it is better for all concerned, if you can get what you want by charm, and the enthusiastic Registrar I saw on my last visit gave me the four figures at the start of our conversation without problem when I asked – kappa/lambda ratio, eGFR, PP’s, FLC’s. She was a charming young Registrar.
More formally you can send the hospital a Subject Access Request which is a standard letter with a cheque for £10 and legally they must send you the full results. In fact it’s much better for them to tell you the results there and then when they have them on screen than have a nurse go rummaging about in their records several weeks later.
MGUS/Myeloma is a difficult illness to understand, particularly the treatment process and, if you approach the doctor in an agitated or distressed condition, it may have an effect on them. Also I have no doubt that MGUS is less of a priority in their eyes understandably.
The thing is though that knowing the results is helpful to the patient in interpreting any symptoms they may be having and also enable them to ask the appropriate questions. As my PP’s and FLC’s had diminished I had no need to take up more of her time but, perhaps because of her youth and enthusiasm, she wanted to talk longer.
In summary, get the figures you need by charm, if that fails ask firmly and, if that fails, submit an SAR.
They announced that they were running 1 hour 40 minutes late when I got to the hospital and some people were grumbling but that achieves nothing so I went into a ‘Zen’ state and turned on my i-Pod. Going in to see a Consultant with a grumpy attitude isn’t going to help me get from him/her what I want to know.
As it turned out I was seen by a very perky young registrar and I asked my results and they had done an ‘about turn’ from last time. PP’s 5.1, FLC’s 135, eGFR insignificantly down to 58 and kappa/lambda ratio out of normal range as usual at 0.05. It’s still there but it’s in ‘hibernation’
Strangely enough at that point I would have been happy to leave her to get on with the backlog but I think she wanted to cover my general health and practise her skills, especially as I was probably her most upbeat and cheery customer of the day. I had chatted with a couple of others waiting for an appointment both at a much more advanced state than me and I felt a little guilty just being there.
I was then a little surprised when she put me down to be seen again in October, as usually it’s once a year with blood tests at four monthly intervals. The blood test interval remains the same but I am being seen sooner than last time. I asked her to check but I wasn’t going to create a fuss and, by my own criteria, I had little to be concerned about. Perhaps their guidelines have changed or maybe some other figure was out of range, but I’m not going to be worried about that. In fact, though I’m usually keen to get results, I won’t bother about the interim results before my next appointment.
Any concerns I have will be put away until October.
Don’t forget your eGFR ‘angelinaevangelou’. Mine’s 60 though today I was given an updated figure of 65. That’s not particularly good, but with one kidney, it’s quite acceptable and no reason for me to worry. Like most of these readings, unless they start off particularly poor then the significance is if they show a constant trend in the wrong direction. Even 40 would be okay but at that level a downward trend would be more significant. My blood pressure has also improved to 148 which was quite a surprise. Again that’s not good, but it’s better that it was.
My next appointment with the Consultant is on Thursday the 19th March and, though I have been feeling worse just recently, I feel optimistic which is good because I discovered that my TV remote control isn’t waterproof, and it was fun to see the shop assistant’s face when I mentioned it. Being annoyed at having drowned my TV remote it was nice to offset it against a snippet of good health news, though Thursday is the big day for me.
PP’s, FLC’s, Kappa/Lambda Ratio and eGFR are the numbers that give me a snapshot of how I’m doing. Hopefully at worst they’ll just crank up how frequently I have blood tests. If what makes me feel unwell is unrelated then I’m not going to worry.
My GP has previously recommended that I take Vitamin D and B12 supplements which I do. I have wondered whether or not it’s one of those general recommendations though I certainly recall that I have been told specifically that I have a deficiency in Vitamin D. I am currently at the MGUS stage with my last pp’s at 9.
One thing Rosie 1961 and be assured that I speak with no qualification or expertise, but from my own research the 24 hour urine test is not the method usually used to detect myeloma. If they use that method it is a 24 hour urine test and must include one sample first thing after waking up (which it would be if it is properly 24 hours of course). I don’t know why they’d want a smaller sample.
Twice I have provided 24 hour samples and, for the second one I got the mislabelled and gone missing response which makes me think that perhaps some doctors maybe following old guidelines and the labs could be rejecting the samples. I have read that only in detecting amyloidosis is urine the test otherwise paraproteins and free light chains are calculated from your blood tests.
Apart from testing for amyloidosis I don’t believe the urine test is any more informative and a 24 hour sample is bulky and I read that it also needs to be kept refrigerated. If you hand it in at your local surgery they simply may not have the facilities to handle it.
As I have had one serious instance when results were withheld from me when I had kidney cancer I nearly came to blows over the missing urine test. If they’d told me that it was unnecessary and they didn’t need it, I would have been fine but hospitals never do that which is silly.
It’s my turn to get blood results next week. Last time they had gone up from 5 to 9 so these results should be significant. It’s a bit like waiting for exam results only you don’t have any control over what they may be. Another jump of 4 and I suspect I’d probably get checked at shorter intervals.
I don’t have any symptoms as regards my bones and, as I’ve always delighted in physical contact sports, it would be incomprehensible for me to think of having any bone weakness. I have plenty of other symptoms but nothing that can readily be blamed on myeloma.
For no logical reason the hospital have always been reluctant to let me have results but, because of what happened before when I had kidney cancer I am not going to allow this. Making me apply formally is much more inconvenient for them, and I only need 4 figures.
A diagnosis of MGUS is rather like a ‘sword of Damocles’ hanging above your head and it’s impossible to ignore it, especially in the early weeks/months after diagnosis. The diagnosis does make a difference to you and any medical decision or treatment you receive and it always has to be borne in mind when you have unexpected symptoms but, you have to be aware that you can have unassociated medical issues as well.
A kidney infection, especially one that won’t go away, is no minor matter but as long as your eGFR remains stable it won’t unduly concern the Consultant dealing with your MGUS. It’s as well that he knows about it and a lots of unexpected and unusual symptoms may point to something else. There again, as long as your PP’s and SFLC’s remain steady they shouldn’t be responsible for these symptoms.
It’s a complicated ‘game’ and even though I have a diagnosed prolapsed disc, when it went just before Christmas and I was barely able to walk, my GP quite sensibly sent me for a precautionary x-ray, which is quite sensible even though I didn’t believe it was a sign of bone damage beyond the already diagnosed disc problem.
When your eGFR goes below 60 I believe that you are supposed to be put on a register, but probably just to have your eGFR monitored, but diagnosis of MGUS means that your eGFR is already being monitored. It’s interesting that mine always seems never to breach that figure but I know that the NHS would never allow my kidney to deteriorate without taking action. Dialysis is just so costly it wouldn’t be in their interests.
Whenever bloods are done for my MGUS it includes a figure for eGFR with is essentially a percentage figure for the efficiency of your kidneys. It is only an estimate and I believe that it can vary more than most figures, but it’s a good general guide as to how the kidneys are working.
I lost a kidney to kidney cancer and my result is usually about 60 (which means that it is 60% efficient compared with perfection with two kidneys) and that’s actually very good and would beat some people with two kidneys.
I believe that you could get a variation of – 10 without creating alarm, but it would be something to keep an eye on under those circumstances. Dialysis only comes into the equation between 10 and 20 and they’d be keen to take action before you reached that level and there are set criteria as to when they should intervene as there are things they can do.
I’m usually fastidious in wanting results (only 4 figures including eGFR) but I didn’t get that one last time and ironically my GP mentioned it had dropped in passing but, it’s been steady for so long, I didn’t bother to ask. I’ll be getting it this month’s reading soon anyway.
When I ask for results I get that alarmed ‘you’re a paranoid hypochondriac look’ from haematology, but actually I’d rather know and I’m less of a bother when I do.
Of course it could be a completely different issue and my immune system has always been a little quirky, but nothing like a kidney infection, I’m happy to say.
My own very simple view is that the human body is so complex and produces cells by the billion every day and there will always be some defective ones. In the normal course of events this doesn’t matter. No one’s body is perfect and at small levels they will be excreted or not cause any problem. If this blood test were performed on everyone I suspect that there would be many more people diagnosed with MGUS, and bear in mind that quite a few people are diagnosed with myeloma only after they suffer a medical crisis.
If it can be considered good news being diagnosed with MGUS, at least the condition is being monitored before we get to the stage where we may suffer irreversible bone or organ damage, if indeed we ever progress to that stage.
My own belief, which may not be correct, is that paraproteins are complete clonal antibodies and FLC’s bits of antibodies both of which are unable to perform their normal function. Excessive production of these useless cells can have many adverse effects and I have always thought that my immune system was slightly quirky. I find it easier to think of it this way. My own type and score at the last test was Paraproteins IgA lambda 8.5 (previously 5), SFLC’s serum free lambda 161.6 (previously 159.2) and my kappa/lambda ratio 0.03.
I believe that the ratio is significant because it isn’t unusual to have SFLC’s in your bloods but they’re looking to see if there is an abnormal excess of one over the other, and mine is abnormal, which probably isn’t surprising.
Obviously the fact that you have other serious medical conditions makes your situation complex to an extent I can barely comprehend and your symptoms and treatment will all have to be considered with those in mind. As one example myeloma can give you neurological symptoms that could also be caused by MS.
Personally I would probably ask the Consultant what he thinks might be the underlying cause of the lytic lesion. Even if he can’t say, you can at least pin him down as to which department will be responsible for monitoring it.
MGUS is probably a lot more widespread than is recognised simply because there isn’t any general screening for it. Of course if you have MGUS it’s far better to have it monitored than only realise you have it when there is a medical crisis, as it’s very difficult to treat you after myeloma has done damage to your bones or organs, and there are many people who have only been diagnosed after this has taken place.
I’m not trying to ‘sell’ it to you as a good thing, but with MGUS you aren’t at risk of plunging into the abyss without good warning and there’ll be every opportunity to deal with any health issues that crop up, if and when they ever do.
Of course, having appointments cancelled on the same day is bad practice and you are right to be annoyed, but that may be down to the fact that you have just joined the ‘process’ and haven’t been absorbed into the system properly. Once you get going it’s like being put on a set of railway tracks and trundling along, hopefully for many years without any problem. If I get my results, which has been a problem, then I don’t feel that I need to see a Consultant as long as the results remain steady.
Even if my PP’s went up by as much as 10 I wouldn’t be concerned as long they asked for another test in a month or two. The point being that they’re looking for an underlying and ongoing change in our results. When it reaches a certain level then they’ll start treatment, but if it looks as if there is something changing, and not just moving up and down, then I presume they’ll try to ‘nip it in the bud’.
4 monthly blood tests is ‘bog standard’ and checking more frequently has no benefit and may suggest that they have reason to think it’s necessary for some reason, and it might be worth asking why if that’s what they intend. Whoever told you that tests would be more frequent probably thought they were reassuring you.
I have my bloods taken every 4 months and only see a Consultant once a year and, as long as there appears to be no significant rise in my results, that’s fine by me. They normally only see you more frequently if your results appear to require it and, from other posts, I think our results are quite similar, though other factors will be taken into account.
I see the Consultant next in March and I’ll have my bloods taken at the surgery. In March I’ll be given an appointment card with my appointments set out and two blood test forms for each appointment that I get done about 10 days before each appointment.
My results are edging up but I would probably only expect them to crank up the appointment cycle if I have a couple of significantly adverse test results.
Hi fozz
We appear to have similar readings. In December 2014 my PP was 8.5, my kappa/lambda ratio was 0.03, and serum free lambda light chain 159.2 and I’m still diagnosed at the MGUS stage.
I have read elsewhere that even though a SFLC level may be outside the normal range, it isn’t considered medically significant until it passes 100. Having said that it’s not unknown for people to have readings in the thousands, at which stage I’d probably need smelling salts.
I have to admit that for unknown reasons I have had problems getting results from the hospital who didn’t appear to understand that it was my legal right. It’s a sore point with me having lost a kidney to cancer and that diagnosis was withheld from me, but I don’t hold a grudge. Their original reluctance has merely meant that I have several volumes of medical notes, more than I wanted. I only require four figures, being the three I have mentioned and my eGFR (for kidney function) to give me an idea of progression.
Progression really appears to be the major guide as to how you will be treated unless your results are out of the ordinary. Of course any other illnesses or symptoms will be taken into account, and it’s hard not to associate any other problems as being down to MGUS. An example is that I have a disc in my back that occasionally slips and leaves me barely able to walk and in great pain. Having that happen alongside a diagnosis of MGUS prompts concern though I didn’t seriously believe anything had broken, otherwise I wouldn’t have walked round to my GP’s. The hospital were a little naughty but the GP prescribed some lovely painkillers and anti-inflammatories and that’s recovered now.
I’m quite physically active though I’m not short of other health issues that I try to ignore. As regards MGUS I would prefer to avoid treatment that may make me feel worse than I do now and evidence of progression in my blood results seems a fair enough way to monitor things.
Looking back at my encyclopaedia of test results I have noticed that in my original BMB it shows nucleated red blood cells at 30% which seems inordinately high. I’m due back at the hospital next month and it’s something I’ll ask about.
Even though we may have similar results, it doesn’t mean that it will affect us the same way, or that worse results will cause worse symptoms. It’s interesting but not relevant in judging how it will affect either of us.
Hi Angelina
My own stats are most recently Paraproteins 8.5 and Serum Free Lambda Light Chain 159.2 Another figure of relevance is the kappa/lambda ratio which in my case is 0.03. I am recorded as MGUS intermediate risk.
My understanding is that diagnosis isn’t simply a case of your results being out of range so you must have the illness. Strictly speaking the ‘normal’ figure for PP’s is nil and for my type of FLC something like 29. You’re correct that the 100 result for SFLC’s is relevant as it is considered the point at which it is medically significant. Therefore you can have an out of range result, but it isn’t considered medically significant until it reaches 100. I have seen mention of it going as high as 100,000.
My kappa/lambda ratio is also adverse indicating that my body is creating disproportionate useless fractions of one type of anti-body. I have been aware for a long time that I have a ‘sparky’ immune system.
I am not medically trained and I cannot advise you, and your other diagnosed medical issues and symptoms probably have as much, if not more significance than your blood results. On top of that the main thing they watch out for is the rate of acceleration of your PP’s and SFLC’s. If my figures remain the same, without other significant medical symptoms, then I wouldn’t expect to receive any treatment. They did increase last time but I’m holding my nerve. I don’t think there’s a set figure at which they’d begin treatment and I don’t mind avoiding treatment if it’s going to affect me adversely.
I believe that there are some figures in a standard blood test that might be indicative of bone degradation, such as calcium. Of course your other health conditions are relevant and perhaps more significant. In my case I have lost a kidney to kidney cancer and I always look at my eGFR (kidney function), which is actually surprisingly good. My hospital don’t give me test results easily in case you think I’m particularly well-informed.
Myeloma can affect people in many different ways and your symptoms and current medical conditions will be taken into account alongside your blood results to make a decision as regards treatment.
In my area a GP can book an X-ray for a patient themselves at a local hospital and the patient can just turn up when they like in working hours and it will be done. It’s one thing that works remarkably well. I only say this because just before Christmas I crocked my back badly and could barely walk. My GP decided I must be referred to the Fracture Clinic and they just put the phone down on her. I had come across this attitude at the hospital before which is why I went to my GP and I didn’t ask for a referral. Things got worse but I’m fine now, but with a back that is liable to give way unless I’m cautious.
I like to be well-informed about my results but when it comes to Myeloma it can be easy to read too much into them and they aren’t easy to interpret as everything has to be taken in to account.
