[graham-cParticipant]

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.

[graham-cParticipant]

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.

[graham-cParticipant]

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.

[graham-cParticipant]

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.

[graham-cParticipant]

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.

[graham-cParticipant]

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.

[graham-cParticipant]

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.

[graham-cParticipant]

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.

[graham-cParticipant]

I’m sorry to her about your experience jaylo47 and it does appear that there is a much better set up in Leicestershire as you say, where I live.

The benefit of being referred to a specialist is that you’ll enter a regular regime of tests which are then monitored by an expert. I started off with a whole body skeletal scan and bone marrow biopsy. My last results had improved so much that I was thinking I might get discharged but today I discovered that my paraproteins have gone up to 10.3 (lower than your figure) and it seems to have provoked a whole new set of tests with a review in a month. Apparently this was because my increase had been over 5, the individual figure itself not necessarily being as important as the rate of increase. Of course you can only determine that by regular tests.

I’m not unduly concerned as my pp’s could go down as easily as they went up but that’s easy for me to say because I couldn’t possibly think the hospital I visit could do more. Considering that you have bone pain you may possibly be a higher risk than I am. My test details and experience are in another post on the MGUS part of the forum if you want to see my results.

I’m an ordinary NHS patient and no one special so this must be their standard protocol. Knowing that you’re in good hands and receiving the best care helps take away a lot of the stress. MGUS test results can fluctuate a lot, making it all a roller coaster ride at the best of times.

I’m not trying to cause you stress by telling you my experience but trying to give you an idea how it is handled by some other areas.

Take care.

[graham-cParticipant]

That was unexpected. I was having blood tests every 3/4 months with a nurse due to call me with results which was a reflection of my very low risk category, and I was happy with that. In fact I had been thinking I might be discharged.

The phone call last week asking me to call in to the hospital suggested that things had changed but, even then, as last my results had been my best ever I doubted that they could become something serious.

Paraproteins                        10.3

IgG Lambda FLC’s            151.0

Kappa/Lambda ratio           0.05

eGFR                                    55.0

Apparently what was significant was the size of the increase in Paraproteins and, their protocol determines that it should be investigated extensively if it is more than 5. I had another blood test whilst I was there and gave a urine sample with another appointment in a month, based on another blood test, with a full body scan and bone marrow biopsy as well.

All this action is a little scary but my PP’s could easily go back down again and it seems improbable to me for a similar rise to take place in a month. Actually if it goes down after all this trouble I’ll actually feel embarrassed.

If it goes up again, then I’ll worry.

• This reply was modified 8 years, 4 months ago by  graham-c.

[graham-cParticipant]

Thanks for your kind thoughts Chrissie but, if I appear to be in mental torment, it’s probably more to do with my style of writing than how I actually feel. As regards MGUS I must be at the lowest risk level from my blood tests, though there is always that risk. It’s just the inconvenient kidney function test results. Alongside that my ‘flavour’ of MGUS seems to be more of the Free Light Chain type which is a risk factor for the kidneys, though the doctor saw no reason to believe that my FLC’s were of a level to affect my eGFR. The trouble is that from what I can tell if one reading worsens, so will the other. If my kidneys are less efficient they won’t clear FLC’s so well and FLC’s tend to make the kidneys less efficient.

Because I know my historic results I have a fair idea of my situation and, unless my latest results, are way out of line I won’t get any surprises at an appointment and I know what to ask, if there is anything to ask.

If my GP is still speaking to me I’ll ask for a referral to Nephrology because I’m well within referral guidelines but I don’t feel too concerned as my current eGFR is well above panic level. It’s just that any relentless trend means that I ought to be put on Nephrology’s map even if they don’t do anything.

It probably didn’t help that I discovered today that my 92 year old mother has a better eGFR than I have.

[graham-cParticipant]

The fact is that I should have been referred to Nephrology before now due to my declining kidney function because I fall well within the NHS and NICE referral guidelines.

However, and this is a good reason for knowing your results and the implications, my current results don’t put me at any immediate risk. I know that my GP won’t refer me without my prompting and I did read that eGFR results aren’t flagged up in GP records when they are abnormal. On the down side, in the past 15 months my results have shown a relentless but steady decline and, in that same period, I have lost a third of my kidney function, which I read is not a good sign.

The eGFR result at my Haematology appointment last week was a repeat of my previous result at 54, being my lowest score so far. On its own it isn’t a problem but, because my results never improve, the risk is that there is something doing my kidneys harm. Haematology didn’t think it was my FLC’s which can be nephro-toxic.

On balance I think I’d better ask my GP to refer me to Nephrology to give them the opportunity to discover if there is something affecting my kidneys that they can do something about.

I would say that the Myeloma Clinic at Leicester looks to be under tremendous pressure with standing room only. The doctor was examining my notes as he spoke and some of the things he said didn’t make sense but, because I had a good understanding of my illness, it didn’t concern me. He mentioned me having a bone marrow biopsy, but I had had one initially and didn’t think my figures merited another one. He also seemed critical that I was seeing them at too frequent an interval which didn’t make sense either as I don’t choose it and I thought I was being seen at the least frequent interval possible. To my further confusion he has arranged for me to have 2 weekly blood tests and an appointment at a ‘nurse led’  clinic in a month.

Having ‘nurse led’ clinics sounds like a good idea for those at the MGUS stage

• This reply was modified 9 years ago by  graham-c.

[graham-cParticipant]

I’m a little surprised to find that the NHS has posted my comment on the surgery review site but it’s well deserved. They overlooked the original change of prescription and, when I pointed it out, they prescribed only half the medicine and when I pointed that out, they did nothing.

I’m a little concerned that since they amalgamated local practices into one new purpose built building it has gone to rack and ruin. Getting a prescription wrong is simply ‘verboten’ for a GP.

Considering that CKD is on my horizon, with a visit to Haematology this coming week, getting prescriptions wrong in the future may have much more serious consequences.

I’m still perplexed as to why the surgery has a doctor there without the authority to prescribe.

[graham-cParticipant]

I consider myself to be a very polite, pleasant and easy-going person but I do have limits.

I cancelled my automatic prescription with the old chemist as the whole process was completely random and I don’t need the extra exercise of calling in on them daily to discover whether or not they had my medicines. With winter coming I considered that I’d be better off not taking medicines than enjoying extra walks in the snow.

I received a text message from my new chemist (who also happens to be located much closer to me) on the appointed day,  and I went to collect the pills with much trepidation. Hardly surprisingly, though I had had a doctor’s appointment for the sole purpose of pointing out that 28 pills taken twice daily only lasts half a month, I again had half a month’s supply to last me a whole month. The doctor I saw told me that he was a Registrar, that I believe to be French for Locum, and the Receptionist said that he didn’t have the power to sign or alter prescriptions, making me wonder what he was doing sitting in the chair at all, but the Receptionist said she did and duly tapped away on the computer in a convincing manner.

Even the new chemist made the mistake of telling me that if I contacted my GP the prescription could be corrected for next month. I didn’t have cross words with the old chemist and, for the geographic reason previously mentioned, I don’t want to fall out with my new one, and I should at least be happy that I’m getting the wrong prescription on predictable dates.

The problem is that I cannot honestly tell the Consultant when I see him next month, that I have been taking the prescribed medicine regularly and I’m not going to cover for my GP. Even the correct prescription doesn’t cover me for a full month, but I’m not that picky.

I simply cannot believe that I’m having to make appointments to see my GP simply to get her to set up the correct prescription. Thankfully lack of the prescribed medicine isn’t life threatening but, as I have CKD, that may not apply in the future.

I really don’t want to fall out with anyone but being reasonable isn’t getting me anywhere. My GP can expect a telling off on Monday.

When my patience is tried, I am not a nice person and I have left a comment on the NHS surgery site but I suspect that they won’t allow it even though it’s very restrained and simply factual, but getting prescriptions wrong is a basic ‘no no’.

• This reply was modified 9 years ago by  graham-c.

[graham-cParticipant]

After an experience I had several years ago I will never have another flu jab. There was no doubt as to what the cause was as the site of the jab came up in a hard lump and I had the worst case of flu ever. To add to that it badly affected the shoulder muscle (the site of the injection) and I had difficulty putting on a jacket for months afterwards. The muscle remains affected but is no longer as bad as it was.

Though strictly the flu vaccine cannot give you flu, the truth is that everyone’s flu symptoms are caused by your immune system’s reaction and the jab is intended to challenge your immune system.

Before that experience ironically my GP had been declining my requests for a jab though I had previously had kidney cancer. It made me very ill but because I felt it was my own fault for pressing so hard for it, I couldn’t go to my GP, though I did have to be referred to the hospital over the effect it had on my shoulder.

Though I had declined a flu jab this year verbally I was surprised to discover that I had an appointment set for me which I cancelled. Funnily enough I actually had flu at the time and I dread to think how my body would react to the vaccine on top of it.

I’d have the vaccination if I hadn’t previously had such a bad experience. As I had my blood test at the height of the virus it’ll be interesting to see what the results are this time.

[Author]

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