[rosie1961Participant]

Hi

This is my first post. My dad has MM, he was diagnosed at 68 and is now 79.

I’m 53 and following a range of unusual symptoms asked my dr to test for MM.

She ran the blood test and I didn’t hear anything. Then on 23 Dec I was asked to provide an early morning urine sample so they could do the Bence Jones test. The paperwork noted that the blood test showed ‘Small igGK monoclonal band identified’. I’m not sure if the use of the word ‘small’ here is good/bad/meaningless!

I called on Monday and was told the result was not back yet.

Called again on Tuesday and the receptionist admitted she mis labelled the sample and requested the 24hr test when it should have been random. The lab still have the sample and will now run the test. She couldn’t tell me how long it will take.

I’m scared and frustrated. I have worried all over Christmas and now I know the lab hadn’t even done the test.

I booked an appointment with my dr for Friday morning but I’m going crazy with worry!

[keithmtParticipant]

Hi Rosie,

Did you see your Doctor yesterday and what was the result?

Hope it was good news.

Keith

[rosie1961Participant]

Hi Keith

Thanks for asking. Yes I saw the GP. No real answers, she played down the result of the blood test. Urine test result not back.

She  said she will refer me to haematology so they can review all results together, so more waiting. I suspect I may be asked to repeat the urine test but we will see!

I feel a bit calmer and know I just have to be patient.

[cygnetParticipant]

Hi Rosie,

Yes it is a bit of a rollercoaster ride mixed with “wait & see” isn’t it? I’m a few weeks ahead of you ( first haematology appt on December 1oth )& now in the test cycle – skeletal survey, bone marrow biopsy, more armfuls of blood etc etc!! It will be the end of the month before I get confirmation of where I am with this.

I have found everyone on here very supportive, reassuring & helpful & the Info line nurses are too. I believe  “knowledge is power” & understanding does help keep things in perspective. It can seem a scary, lonely place to be when you’re in limbo waiting for results.

I am 53 in a few weeks time & I have read 3 out of every 100 over fifties test positive for Mgus. If we are identified early we can be monitored & therefore offered treatment if necessary – I see this as a good thing.

Stay positive – there are many inspiring stories on here to read when you need a boost.

Love & hugs,

Cx

[keithmtParticipant]

That’s great news that your worry level has gone down; we all know what you’re going through. As Cygnet says, keep positive and remember there are lots of stories on here (like mine) with really good outcomes.

Thinking of you

Keith x

[rosie1961Participant]

Thanks C and K for your reassurance. I have an MRI of head/neck on Wed as I have no bone pain but have been getting some random tingling (possibly due to my B12 deficiency) and my other strange symptom

which is one cold leg, mainly in the morning! At least it is all being investigated.

 

[keithmtParticipant]

Let us know how you get on With the MRI Rosie …. all the best.

Keith x

[cygnetParticipant]

Hi Rosie,

Just wanted to add my best wishes to Keith’s!

I hope all goes well tomorrow 🙂

C x

[rosie1961Participant]

Hi, MRI is all done. The results will be sent to the hospital in 4-5 days.

Just had a call from GP about the bence jones test. Apparently the hospital lab has run out of the necessary agent and they won’t have more until the end of next week. That is not good!!

[keithmtParticipant]

That is such a pain Rosie, just what you needed eh? I know it’s going to be on your mind but don’t get bogged down with worry, the results might be much better than you expect so try and hang on until you know.

Thinking of you.

Keith

[rosie1961Participant]

Thanks so much for your support 🙂

[rosie1961Participant]

I finally got the Bence Jones result today, it was normal 🙂

I also had a private SFLC assay that was also within normal range. The GP is referring me to the heamotologist so I will be able to discuss the implications of the original blood test that showed the monoclonal band.

 

[keithmtParticipant]

That is just fabulous news Rosie about the Bence Jones, you must be very relieved. I hope the good news keeps coming …….. let me/us know.

Big hugs

Keith

• This reply was modified 9 years, 9 months ago by  keithmt.

[rosie1961Participant]

I have my haemotologist appt on 25 Feb. They have requested bloods before that, spep, igs and b2m, so at least I know they are being thorough.

The B12 jabs seem to have stopped the tingling but I’m still getting one cold leg at night, with some other random  cold patches!

[Anonymous]

Hi Rosie, got my appointment on the 25th February as well, it’s my first one since my diagonsis last October with Asympotomatic Myeloma, getting very nervous about it as it will be a new hospital and consultant as I asked due to advice from Professor Cook at leeds to swap as previous consultant was not good and had no bed side manner at all. Let’s hope it’s a good day all round for us both.

helen x

[Author]

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