[twitchy1963Participant]

Hello. I’m here because I’ve been asked by a rheumatologist to undertake an early morning Bence Jones test – last one was done just before Christmas and was clear. I have waited for a week because I’m newly on a topical HRT, Vagifem, and thought this might interfere with the result. So now I’m no longer taking this medication every day I feel it is safe to do this. Does this sound sensible and have you any tips for me getting the concentration of urine to maximum effectiveness for a good result please?

My story in brief is that I was diagnosed and treated for rheumatoid arthritis five years ago. However I was only newly through  my menopause and, after a few years on immunesuppressant drugs my RA disappeared from my joints. But the neuropathic pain continued to escalate and my ESR and CRP did too. It was assumed by my doctors that my RA was still active systemically, if not in my joints. I also had a lumbar puncture and was found to have paired Oligloclonal bands – indicating high protein levels.

last September I relocated and saw a new rheumatologist – who cast doubt over my RA diagnosis and told me I categorically did not have any other connective tissue diseases. Because my total protein and IgA were elevated he asked my GPs to run a Bence Jones test on me. This was negative I was informed on Christmas Eve. My rheumatologist was happy to write off Multiple Myeloma therefore – but did not seem interested in my raised levels of imflammation in my blood – suggested I return to neurology or endocrinology.

Since then I’ve developed severe constipation and bloating, suffer from reflux and rib pain, slight rectal bleeds and gynae problems so am being investigated to rule out ovarian and colon cancer this month too. My womb and bladder are fine I’ve so far learned.

However, due to circumstances outwith my control we have moved again. So I saw a new rheumatology registrar last week – who felt that Bence Jones needed doing again six months on – because of my blood markers and symptoms. These are too many to list but a feeling of turning to stone with bone ache, cold chalky feet, small fibre neuropathy which is not explained by RA or diabetes or b12 deficiency, dizziness, bloating and feeling terribly tired all the time. I’m not in screaming pain anywhere but I just don’t feel very well most of the time.

So how reliable is the Bence Jones test please?

 

[iangParticipant]

Hello Twitchy

My reply just got wiped by Safari reloading the web page. Sigh. Briefly, many people with myeloma have Bence Jones protein in their urine, but a lack of it does not indicate you have not got myeloma. The test can be done on a small sample, which you can provide straight away at your GP’s surgery or at the hospital, or on a 24 hour sample where you collect all your urine over a 24 hour period, typically about 2.5 litres if you’re drinking enough fluids. The nurse can provide you with a collection bottle. You may need two if you drink a lot of water (or tea or coffee). The bottle gets quite heavy as it fills so I used to pee into a plastic jug (reserved for the purpose) then empty the jug into the collection bottle. My BJ tests are done on small samples these days, which are much easier.

I’m not sure I can comment much on the other issues you have, apart from having to put trust in your doctor / registrar / consultant. They will be trying to understand what might be causing your symptoms.

An abnormal ESR can be an indication of myeloma but it can also be an indication of many other conditions, including arthritis.

Good luck, Ian

[twitchy1963Participant]

Dear IanG. Firstly many thanks for replying. My second BJ test was negative again and I would like to say that I’ve stopped worrying now.

But unfortunately I haven’t because my rheumatologist has written to say that my PV is raised at 1.98, my CRP is raised at 19, my RBCs are raised as usual and my IgG and IgA are both elevated. I have no sign at all of inflammatory arthritis anymore and he has instructed a lip biopsy and ultrasound of my salivary glands. I do also have my first positive ANA of 1.320 but this is also non specific.  If the biopsy proves negative then this rules out Sjogrens and leaves me with random inflammation and what I feel to be a worsening in dizziness, fatigue and slowly progressing small fibre neuropathy. None the wiser but crossing everything that I have Sjogrens rather than having to stay in this limbo.

[twitchy1963Participant]

PS hate it when safari wipes my posts out – infuriating!

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