I know nothing but I suspect that relatively small changes aren't greatly significant, though it's best to have a small move down than up. At least it's in the right direction.
I've read a lot but when it gets down to a genetic and molecular level, it's probably doing me more harm than the illness. They say that blood is the most complex organ in the body and when you realise how incomplete a complete blood count is, it's mind boggling how many things there are that can be checked.
My predominant symptom is my abdomen and awful digestion which isn't suggestive of myeloma I admit.
The only possible link is if I have amyloidosis though I'm not sure that my results are suggestive of that.
For a long time I have eaten one food item daily for six days a week because I know it makes me ill. It isn't a psychological problem, it's the only way I can eat. On the seventh day I eat a little more when I go out for the benefit of my sanity. I have an impressive ability to go without food and after last week I may be back to the fasting method to alleviate symptoms.
To make matters worse my visits to hospitals usually end in conflict, which I find hard to see as being my fault. My GP persuaded me to go to Rheumatology even though I was reluctant earlier this year and when i went I was very unwell. I wasn't examined or tested and I was discharged without being told even though I had a very obvious problem. When I queried this i discovered that a diagnosis had been made to my surprise. Now the matter is at the Parliamentary and health Ombudsman and treatment is awaited after 8 months.
If you have a problem that no one can diagnose it's easy to grab on to one unusual set of results and believe that must be the underlying cause which I believe is why doctors can be careful about passing on information but, in my case I react badly to information being withheld, and I have a legal right to know any medical results. I believe that I can be objective, especially if results are given with an explanation. I have had a bad experience with my kidney cancer when I wasn't told information and doctors don't understand that it will have a financial impact doing this to the patient.
The Consultant Haematologist did kindly write to explain the situation to me, though by then I had already applied for my medical records and the two didn't match. I appreciate that medically those at risk of bone degeneration or with tumours are the ultimate priority in all respects, or those at most risk of developing bone deterioration but it is not helpful if others, especially those with symptoms, aren't informed.
Of course, perhaps my problem is something else entirely, which is possibly the worst possible option.
My next visit is on thursday and I have drawn up a form to take down my latest readings. Essentially the only important to me is the "sfllc" and I wouldn't have known this without applying for my medical records. I hope they don't refuse to give it to me or we'll be in conflict again.
Welcome Benz
It does appear that a lot of people here have never had any forewarning before something dramatic has happened but Plasma Cell Dyscrasias or Monoclonal Gammopathies (I'm no expert) can be very varied in their symptoms and effects.
I'm different (and flippant) and have a multitude of symptoms, but nothing critical, which sort of make me an equivalent to a white or yellow belt if you think in karate terms. I am categorised as MGUS which can be nothing or represent the run up to one of the family of Myeloma illnesses.
I have recorded my stats elsewhere here and from what I have read they put me at increased risk of progression, but my symptoms may suggest something else is at work. My FLC score of 131 may seem high at five times normal but someone here mentioned a score of 31,000.
Without significant symptoms it's usually a waiting game to see how your scores progress, which is sensible, even if it is frustrating and worrying. I take the view that I don't want to feel worse than I do already with unnecessary treatment.
mike59
Take no risks. I felt a bit of a fraud myself when it was first suggested that I might have 'bone cancer'. My GP is usually very cautious and that made the suggestion all the more surprising.
At the very least you are at increased risk of bone damage and back pain is not something to risk. I am officially only MGUS but I spent a week in hospital last year with back pain and, though my CT scan evidences quite an amount of bone damage, it appears that they don't put it down to MGUS. I can walk alright, but I do have aches and pains, especially if I exert myself.
I've led a very active life and know that it can be tempting to disregard risks but damage done now could affect the rest of your life, and it won't benefit your employer if you spend months off work through back pain.
It appears that I have a slightly unusual variation and MM can affect you in many different ways, and part of the medical process appears to be seeing how it affects you and how fast it is progressing.
My next appointment isn't until late September but I presume that will determine what happens next if my results have increased significantly. So far they increased 25% in six months.
When I was working my employer always wanted definite information but that's not how it works.
Yes I had a bone marrow biopsy and that didn't show anything alarming.
The CT survey they did appeared to evidence that I have led an adventurous and active life, but presumably they don't consider any of the damage they noted is down to MM, but I'll go over it again as some of the things they mention are a concern to me.
I mowed a small area of lawn at the weekend and the following day I felt as if I had been trampled by a herd of wildebeest. Thankfully I can walk normally and without a stick, though I always carry one because my balance isn't good and walking fast with faulty steering makes me dangerous to other pavement users.
I even noted that they performed a 'Congo Red' test for amyloidosis which was negative and, from my symptoms, I always thought that was most likely.
It's the strangest thing that people suffering from the same illness, or family of illnesses, can have such divergent symptoms. In that respect I'm probably quite lucky, though I don't feel it. As much as I am desperate for a definitive diagnosis I dread it too, as any treatment is likely to make me feel worse that I feel already.
I know the frustration and anxiety and I have been under investigation since the start of the year though my symptoms began years ago.
Officially I am defined as MGUS which doesn't seem to fit with my symptoms, but myeloma is such a wide ranging illness it's wise to take nothing for granted or become too anxious before anything certain is known.
My experience is that unless your readings are very high they'll look for a trend, which appears to be what they're doing with me. It's frustrating, but I wouldn't want to begin a course of treatment I don't need which could make me feel worse than I do already. That would be the last thing I need.
I have Bence Jones Protein – Iga Lambda sFLC – low paraprotein but sFLC about 130 (I'll post figures some time this week) and a ratio of 0.1 (or maybe 0.01 I must check). I have read cases of people having count of 8,000 but that sounds bad.
You can read a lot of scary stuff online but, in honesty, until they know precisely what you have and how it's affecting you, patience is required.
My symptoms make no sense but at least having found 'out of range' readings it gives them a place to start looking as in your case. My readings are increasing and my next appointment is three months after my last so I'm prepared for a shock. If my readings worsen in line with my symptoms I won't be disappointed.
Hang in there and best of luck.
I probably fall in to the weird category.
I am officially classified as MGUS. My paraproteins aren't high at all, and it's my sFLC's which stand out and, though well above limits and increasing, I've read about people having readings as high as 8,000.
My symptoms have never been classic, but there are so many variations to this illness that anything is possible.
I'll post my results in the forum later this week but, in spite of much research, I am no wiser.
I agree with jellytot and that might be a useful area of investigation. Interestingly my GP referred me to rheumatology but I had a bad experience. It was a very bad day for me and I felt very unwell, and the Consultant didn't perform any examination or test and just discharged me, without telling me that was what he was doing. I expect you'll have better luck but Consultants in different specialities are always reluctant to treat the same patient from my own experience.
I had a very powerful negative reaction to a flu jab last winter that has never happened before, but it doesn't prove anything.My next appointment in in late September and the readings then should establish if I'm on a set trend.
Out of interest I'm Iga lambda.
As well as the sFLC reading the kappa/lambda ratio is significant. I have had three attempted measurements but only one worked and it came out as 0.1 which is outside normal range. If you have high readings but a 'within limits' ratio it can point to another illness perhaps.
The reason given for not getting a reading was insufficient albumin excretion, which appears normal on a CBBC, but the sFLC is taken using a different method.
If my illness is MGUS then there must be something else wrong with me as MGUS is supposedly asymptomatic and I have more symptoms than I would like.
My GP claims to only have scant details of my appointment in February, which is why I've applied for my medical records.
Last night I got up in the middle of the night and I had a dreadful case of the spins' and it wouldn't go away. I am used to having symptoms of orthostatic hypotension but this was of a different order and intensity completely. What this had to do with MM I haven't a clue, though my own speculation (with no supporting evidence) is possibly amyloidosis. My two most severe symptoms have always been my abdomen/digestion and the OH, with lesser aches and pains to a lesser extent. I do believe that I have IgA kappa paraprotein with Bence Jones protein detected which potentially fits with amyloidosis, but speculation is fairly pointless, and amyloidosis can have its own varied panoply of symptoms.
When I woke up this morning the 'spins' had gone but I still feel pretty shaky.
I did notice that one of the blood tests I had yesterday was for Beta 2 Microglobulin. From what I've read the hospital are either being scrupulously cautious or there's something they're not telling me. Either way it would be preferable if they kept me informed, which doesn't seem to be how my hospital functions.
I'll have a written list of questions for my next visit on 21st June. That's another thing, you don't have two monthly appointments if you have MGUS. If what's giving me symptoms isn't myeloma then it's better that I know sooner rather than later.
A diagnosis of MGUS on its own means nothing and doesn't account for the physical symptoms I have been experiencing which are worsening.
Haematology haven't enquired about them and I haven't advised them because the diagnosis doesn't warrant it.
Even discounting my kidney cancer experience I am happy to be easy going and polite, but expect to be kept informed of all relevant information, but this hasn't happened in my case. I'm a little 'squinty eyed' that my GP claims not to have my April results and, even though I'm not at my best, the hospital's testing regime has been faulty. I was asked if I had had blood tests done when I hadn't been told to arrange them and my April appointment didn't include a urine test, which seems strange when the Bence Jones protein has been detected.
The scant information I currently have has raised further issues and I knew nothing about bone lucency and 'bone cysts'.
I've written to the Haematology Consultant expressing my concerns and will apply next week for my medical notes.
I wish it didn't have to be this way but if I can only get information by correspondence, that's how I'll do it.
I'll be having blood tests and submitting a urine sample next week for an appointment in late June and I'll have a list of written questions prepared as I doubt that I'll have my notes by then.
My balance isn't too good, though ironically the faster I walk the better I feel, but other people on the pavement need to watch out. For that reason I carry a walking stick, though I don't need it to walk. It acts as a warning sign that I don't steer very well.
My right leg appears to have a mind of its own at times, rather like a defective supermarket trolley. When it first started I noticed that I wasn't lifting the foot off the floor much as I kept removing the soles of shoes by tripping up.
I am most affected when I stand up after lying or sitting down for any length of time – then I appear drunk as I have no balance at all.
Luckily I spend time with my 90 year old mother and I still have more mobility than her and when she says she needs a rest I don't have to admit that I need one too.
Less than ten years ago I was in the Himalayas. How time changes things. Then I was supremely fit.
I am beginning to understand things better.
MGUS is a 'watch and wait' holding diagnosis.
Detection of the Bence Jones protein, which is a tumour marker, elevates the risk, though it doesn't quantify it.
Though I only have scant details, areas of bone lucency have been detected in my hip that have been taken to be bone cysts based on a pre-MGUS diagnosis. That is palpably incorrect.
The two factors that are against me are my history of previous kidney cancer and current physical symptoms.
The bizarre situation is that I am unable to receive treatment from Rheumatology for symptoms they would treat if not for the MGUS diagnosis.
As MGUS is asymptomatic, Haematology won't treat it either.
It's a lot easier for me if I can leave things to be dealt with by the medics, but disappointingly again I have found this not to be possible. The bone lucency issue alone is worrying as regards their diagnostic ability. Relying on a pre-MGUS diagnosis that even then was pretty tenuous, even I can see as being sloppy. Bone lucency and myeloma are not unconnected and its folly not to re-evaluate past interpretations in light of new findings.
Sorry – I'm feeling grumpy and not a little unwell. I feel that this is going to be a bumpy ride.
Any diagnosis, and my view of it, has to be considered against the fact that I have had a radical nephrectomy due to kidney cancer and, the diagnosis for that was withheld from me and I eventually had to contact my MP to receive treatment. It was an inexplicable situation.
Withholding information from me is therefore not something I appreciate and I have been easy going believing that I was being told everything. To avoid coming in to conflict with Haematology I will make a subject access request for my medical records, and I will inform Haematology what I'm doing.
MGUS is not a diagnosis to be concerned about and even the presence of the Bence Jones protein isn't any reason to panic. However, with my medical history and being a marker for malignancy it does represent a cancer diagnosis and not something I wish to discover by chance. I have physical symptoms which have not been addressed simply because with a diagnosis of MGUS it is treated as being asymptomatic and symptoms are ignored. Additionally the Bence Jones protein is not a friend of kidneys, and it might even explain the cause of the original malignancy (cysltic papillary renal cell carcinoma with a fibrotic pseudo-encapsulation 13.6 cms).
Though my GP has given me a copy of a letter from my February appointment, which only has sparse information,[i] I am told[/i] that the report from the April appointment hasn't been received yet. The letter I do have mentions small areas of lucency in my hip, though it discounts them with a pre-MGUS interpretation as representing bone cysts. In the circumstances that interpretation is wrong, even I can see that.
I'm particularly sensitive about not being told things after my previous experience, and it's a shame that I have found this to have happened to me again, though I'm not going to create a fuss about it.
If I didn't have physical symptoms it wouldn't be an issue, but once it is detected to be a malignancy then significant physical symptoms should be taken in to account, even if not investigated.
We'll see how we go.
I'm exceedingly disappointed with my GP, more especially because of my experience with kidney cancer.I won't go over that but you'd be shocked to hear what happened to me and it involved me not being told what was wrong with me. Going over that again won't help.
I must admit that it's a lot to assume from two innocuous sounding words 'Bence Jones' but small words make a lot of difference with myeloma, more especially because my worsening symptoms have been dismissed as irrelevant. Looking in to light chain protein they make sense, though I do understand that the word 'symptom' can be used in different senses.
I haven't been told what i should have been told and, if my GP won't tell me, then I will get my medical records. It's a standard procedure, and one I went through with my kidney cancer.
I found this useful link which has treatment guidelines and should be helpful in confirming what stage I'm at. Currently I receive no treatment and have two monthly appointments.
[url=http://www.patient.co.uk/doctor/Myeloma.htm]http://www.patient.co.uk/doctor/Myeloma.htm[/url]
If they gave me the information I needed this wouldn't be necessary.
Though perhaps not a renowned medical resource it's usually quite detailed
[url=http://en.wikipedia.org/wiki/Monoclonal_gammopathy_of_undetermined_significance]
http://en.wikipedia.org/wiki/Monoclonal_gammopathy_of_undetermined_significance%5B/url%5D
[quote]Monoclonal gammopathy of undetermined significance
Other typical features seen in multiple myeloma are absent, such as hypercalcemia, lytic bone lesions, Bence Jones proteinuria, and AL amyloid.[/quote]
I am grateful for your comments, and I'm fine with bad news, after all I've had kidney cancer, but that was very badly handled and It's unnerving to discover something by accident which has been held back from me.
When my GP first mentioned 'bone cancer', which was the term she used, I discounted it because I didn't have any significant bone pain. I was going to the GP for other long standing worsening symptoms so the original referral must have related to blood results.
When I had a full bone scan and marrow biopsy made me reconsider, though it didn't seem right that others had acute and severe symptoms without any prior warning. I couldn't kid myself that I had any bone related symptoms.
I've been doing some research and have found this
[url=http://ndt.oxfordjournals.org/content/11/3/413.full.pdf]http://ndt.oxfordjournals.org/content/11/3/413.full.pdf[/url]
[quote]With only rare exceptions, Bence-Jones proteinuria reflects a malignant condition. Multiple myeloma is the leading disorder, with 20% of patients excreting Bence-Jones proteinuria at presentation, and 60-80% during the course of the disease. Of note, multiple myeloma may exhibit the usual aggressive form, or follow a more smouldering course. AL amyloidosis, Waldenstrom's macroglobulinaemia, chronic lympho- cytic leukaemia, and papular mucinosis are additional B-cell related disorders to be considered. In addition, long term follow-up of patients with 'idiopathic' Bence- Jones proteinuria indicates that most patients ulti- mately develop a malignant process, after an interval of as long as 20 years. [/quote]
I won't believe anything until I have it from several reliable independent sources but it gives an entirely different picture to that I was given.
It's infuriating to not be told the full facts by my GP which allows them to ignore my current symptoms.
Their view appears to be that I have MGUS – ergo – I have no symptoms.
I'll write to my GP and give her a chance to tell me what I should have been told otherwise I'll make a subject access request and get my medical notes.
I know that there are many MM sufferers here with much worse symptoms than mine, and my symptoms bear no relationship to theirs.
The information you've given about the readings that are significant is very useful Vicki.
I don't think my GP is doing it intentionally, but getting me on my 'high horse' is useful in energising me in to activity.
There is a small chance that the young GP who mentioned 'Bence Jones' may have been using it as a general expression, but I doubt it.
I don't mind hearing contrary opinions and views but my own sense is that MGUS means nothing on its own, but MGUS + symptoms + Bence Jones protein is a different kettle of fish. The creeping rheumatic symptoms appear to indicate that 'bone cancer' isn't what's afflicting me. Undoubtedly that deserves a greater priority due to the severity of the symptoms, but I'd like to know what lies ahead for me.
Thanks very much for your reply Dai.
Unfortunately I'm going to get more support from this forum than my GP.
There is something very amiss with me, but without acute symptoms of a bone nature and being advised that I had MGUS then MM didn't appear to be the problem.
[quote]MGUS: A Common But Typically Harmless Blood Disorder.[/quote]
[quote]Normal results
Bence Jones proteins normally are not present in the urine.[/quote]
[quote]Bence Jones proteins are considered the first tumor marker. A tumor marker is a substance, made by the body, that is linked to a certain cancer, or malignancy. Bence Jones proteins are made by plasma cells, a type of white blood cell. The presence of these proteins in a person's urine is associated with a malignancy of plasma cells.
Bence Jones proteins are present in 50-80% of people with multiple myeloma. People with other malignancies also can have a positive Bence Jones proteins test, but less frequently.
Certain nonmalignant diseases, such as rheumatoid arthritis, systemic lupus erythematosus, and chronic renal insufficiency, can have Bence Jones proteins in the urine. [/quote]
There does appear to be a significance to the detection of the Bence Jones protein but I don't mind hearing diverse views. I certainly intend to get as many opinions as I can from many different sources. I'm just peeved that I can't get correct basic information from my GP.
Rheumatoid arthritis would be a good way to describe my overall symptoms, so I'm going to keep an open mind.
Noting this
[quote]Urine is the best specimen in which to look for Bence Jones proteins[/quote]
I haven't provided a urine sample for four months, though one is due next month.
I have been much too polite and will prepare questions for my next visit and require straight forward answers.
It's not that I'm being hysterical. I'm just deteriorating and would like to be treated if there is a treatment for what I've got.
