[rosie1961Participant]

Oh no-what an absolute pain!!!  I hope you can soon get the test done.

R x

[rosie1961Participant]

Hi Helen, hope everything goes ok for you today. I saw the haemotologist. She sent me for full skeletal x rays. She will review those with my bloods/MRIs with her team next week. I see her again on 10 March.

[rosie1961Participant]

The GP surgery called today. They have checked the bloods ordered by the haemotologist. The only one that was highlighted as abnormal was the spep, showing the same result as before – small monoclonal band. It’s a relief that the tests did not show anything else.

 

Will see what haemotologist says on 25th and wait for MRI.

 

My leg is still cold at times and both legs have started burning in the night, waking me up. All strange!

 

 

 

[rosie1961Participant]

Hi Eva, have you had your thyroid and B12 checked as both of these affected me quite badly (especially when I was hyperthyroid)

[rosie1961Participant]

Is it worth asking your GP to run the Bence Jones urine test while you wait to see the haemotologist?

[rosie1961Participant]

Hi Eva, I’m afraid I can’t answer your question about the bloods. But I understand your frustrations. It sounds like you have been waiting for answers a long time whilst feeling so ill.

My dad has myeloma and I have been getting random symptoms for a few months. Apart from feeling tired I don’t have any major symptoms but it’s still hard to deal with all the questions.

I really hope you get answers quickly . Thinking of you.

 

 

[rosie1961Participant]

Unfortunately some medics just see people as pieces of meat. I also think when they can’t cure it they just don’t know what to say. Horrendous for that poor guy.

I recently had head/neck MRI as they were concerned about the tingling in my arms and hands. Although ordered by nhs it was at a very local private clinic. I was more scared of the result than being in the machine! It was all clear – a big relief.

I’m sure the puppies keep you busy!

[rosie1961Participant]

Hi Helen, hope the new consultant has better people skills. These things are so important. Will definitely be thinking of you on 25th Feb.

Saw my GP yesterday evening and she is sending me for a lower spine MRI to see if anything there is causing the cold leg. It’s a mystery!

[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!

[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.

 

[rosie1961Participant]

Thanks so much for your support 🙂

[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!!

[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.

 

[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.

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