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Pilgrim 12 years, 5 months ago.
Unfortunately I only get any sense out of my GP when things are mentioned in error and I get a bad reaction if I ask anything.
I had been told that I had MGUS with a low para protein figure.
I have never believed I have any bone related symptoms. I have plenty of other symptoms including a dysfunctional digestive system and what I can best describe as creeping rheumatism which affects tendons/muscles. I can function but when I get up from rest I feel that I am going to pass out as I re-establish connection with my limbs.
I didn't ask what my pp level was at my last haematology appointment simply because of the reactions I get.
At my last GP visit a new and young doctor mentioned Bence Jones when I asked about my pp level. He didn't answer my question but Bence Jones had never been mentioned before.
Understandably, I am not happy at not being told anything, especially as I feel so unwell and I'll write to my GP mentioning I'll make a subject access request if necessary.
As far as I can tell – MGUS is not significant, not that I have concerns that I have MM bone symptoms – but any evidence of Bence Jones proteins are.
I'm going to do some more research but I wonder if anyone can confirm that detection of Bence Jones protein is more significant than MGUS. I have lost confidence in my GP over this and if I can't get any sense I'll need to see my medical records.
Hi Pilgrim,
Your GP is vital to maintaining a link between home and the haematology team at your hospital… for drugs, home-help (when needed) and general communication if or when you apply for benefits.
But… the main players in your diagnosis and medical development are you and your haematology consultant. The consultant will keep your GP up to date but he/she should have no further say in your treatment once the consultant has been placed.
You should be getting full and unfettered information about the progress and developments of your MGUS, including any findings in the blood tests.
[b]MM 101 – Simplistic version: [/b]
Bence-Jones is a light chain version of MM… which is usually heavy chain, measured in paraproteins. Bence-Jones is measured in kappa light chains. I am not sure that the detection of Bence-Jones is significant, other than determining the type of MM. You really do need to speak to your consultant and/or a Lead Nurse who can be very informative and very supportive.
You can always ring Ellen or one of the team at Myeloma UK… 0800 980 3332 they will put you right within minutes…. that's my advice.8-)
Wishing you all the best:-)
Dai.
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.
Hi Graham
Sorry you are not getting on well with your Dr 🙁 but i think that MM might scare them (i know tel me about it lol)
But I am blessed with a Consultant that told me I dont need to go to the Dr for MM if I feel I have a problem I just have to phone the Ward up for advice or help, and that is what I have done.
Good Luck on your tasks
Tom "Onwards and Upwards"
Hi pilgrim,
My partner Colin was diagnosed last october 2011 with mm. It's a real shame you've had no support from your Gp, colins has been brilliant from the start, however once the consultant is in place they are reluctant to offer advice but will listen and be supporting, or should be!
I'm always hesitant to say what is significant or not as I am not a medic, however colins mm seems to be indicated more by light chains than pp. For example his light chains started at 31000, but his pp at 'only' 17. The consultants we see have not gone into the detail of pp vs bence jones, but at the last appointment mentioned that colins Bj was more of an indicator. Not sure if that's good or bad!. His figures are now down to 1.2 for pp and 1300 for light chains.
It's really important to know what you're dealing with as I believe time is always of the essence,early diagnosis and therefore early treatment. Not wanting to tell granny how to suck eggs but although entirely right that you're angry you need to be focussed to get all the information you need; write all of the questions that you want answers to in a formal letter maybe? Are you seeing a consultant? If so they are best. Sorry this might not be much help but best of luck. I'm full of questions every time we go, its the only way. Knowledge is power 😀
Vicki & Colin
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.
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]
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 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.
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.
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.
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