[AlicoParticipant]

Hi everyone,
I have not been diagnosed with MM. But
My gastroenterologist was concerned over my very low lymphocytes 0.7 and ordered blood tests. Then I had a call from the nurse saying they wanted me to do the 24 hour bence jones test.
I did it but only managed 12 hours as I drank too much water in day and filled the container by 12 hours.
On seeing the gastroenterologist again.. He was scratching his head as he did not understand why my lymphocytes were so low and other white cells and yet bence jones showed nothing.
I did not get the chance to tell him I had only done 12 hours of it.
I am not seeing him again as he closed my case and discharged me.

My worry is by not fulfilling the 24 hour test properly will the lab have been unable to find any proteins in urine.. Or is this 24 hour test just done to quantify the amount of proteins in the urine.
Would some have shown up in 12 hours anyway? Also when I took it back to the hospital I left it with the nurses in a warm outpatient area .

I would really appreciate someone's knowledge about these tests as I am worried that the problems I am having … Back pain may be related and I may have messed up the test.
Just one other thing is it possible to have myeloma without the proteins showing up in the urine.
The gastroenterologist never gave me the results of the blood tests. Just said he couldn't understand why my white bloods were so low and left it at that.
Thank you all so much in advance for any help on this and I wish you all the very best on your journeys with this.
Ali x

[MothasParticipant]

Hi Ali
I've done 2 or 3 of these.

I'm not an expert but I would have thought that you have been asked for 24hrs worth of urine because they need it over that time period to be certain if there are any proteins being produced.

And yes, it is possible for myleloma to be active even with a negative BJ test. I've had a recent BJ test, a bone marrow test and multiple blood tests. All of which show no detectable level of myeloma. The only indication I have it is in bone damage in my back and ribs shown by an MRI scan i had before xmas.

If you have any concerns I would advise you contact your specialist again to discuss what happened.

all the best

Tom

[eveParticipant]

Hi Ali

You would be better you rang the myeloma help line t speak to Ellen or another nurse.!!!,

Every one on here can tell you there story but it will not help you .Go back to y our GP and keep pushing until you find out why your white cells are low,the problem with Myeloma is a GP. Might only come across 1 case in a life time and people have different symptoms.Eve

[DaiCroParticipant]

Hi Ali,

I agree with Eve, ring MUK and speak to Ellen or one of her colleagues regarding the complete rundown of the test. I have done about 10 of these tests, including one early on where, like you, I flooded my body with liquids and filled the bottle before midnight… actually it was before 7:30pm (I was listening to 'The Archers' 7pm to 7:13pm at the time the bottle was filled 😛 ). I told the nurse at the counter the following morning and she ditched the test and gave me 2 more bottles and I started again the following day. I felt embarrassed but she said it happens regularly with new patients (although they don't tell you that when they dish out the bottles). :-/

As I understand it the test requires you to go to the toilet as normal for the first pass of the day and finish with the first pass of the next morning… it is essential that you complete the 24 hours (or as near as). It says on the bottle not to go above the marked line but as often as not I go over rather than start a new bottle but I know it is difficult to gauge. 🙂

All the best and regards 🙂

Dai.

[VickiParticipant]

Ali

Yes I agree with the others. Colin did a lot of these 24 hour urine tests. It's important to get it right but at least also to understand what and why your are doing it.i would suggest speaking with mm nurse on the forum, they are so so helpful. Also your Gp and specialist. How come the specialist was in so much of a hurry to let you speak 🙁

Vicki and Colin x

[AlicoParticipant]

Thanks everyone for replies .
I will ring tomorrow.. I suppose what I really wanted to know was whether the 12 hours would be enough for a bit of the protein to show up…
I sort of thought 24 hours would be to work out a percentage of bence jones you have.. Sort of amount. But that maybe 12 hours be enough to show whether its there or not.
I did say to nurse when she told me it was 2 litre bottle that I would prob need more and her reply was just do what you can, so when I saw gastroenterologist I didn't really bother much about it just accepted what he said.. It was only really after that I started to worry over it especially now when pains in back getting worse.
I saw him in October.
Does anybody know if the some proteins might show in 12 hours??? Surely if they are in urine they would??? Or is the test designed so that it has to be 24 hours for any proteins to be relevant????
Thanks everyone.
Are the helpline medically trained??
All best,
Alicoxxx

[eveParticipant]

Hi Alco

You can not base having Myeloma purely on urine,other factors are taken into consideration.it is not worth going into unless you are diagnosed with myeloma,low white blood cells can open up many problems,so do not go scaring yourself thinking you have Myeloma it is uncurable.

Go back to your doctor or speak to a well qualified Myeloma nurse on this forum.she will be able to give you the facts or send you a booklet.Eve

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