Dear Clover, my thoughts are with you at this time. My dad died on 5 Dec after many years with Myeloma.

I hope that you are able to find peace, but it is early days and it’s ok to grieve. Give yourself time.

Is there a local Carers group? There is one in my local borough and I know they are very supportive in lots of ways.

One of the reasons I was tested for MM was because my dad has it and I was getting pins and needles. It turned out my B12 was low and since having B12 injections the pins and needles have gone. There seems to be a link with B12 and MGUS.

I was diagnosed MGUS, my pp levels are very low. But I do still have some strange feelings in my legs at…[Read more]

Hi Val, my dad has MM and I have recently been diagnosed MGUS (I’m 54). I’m not too worried, I just see it as a potential early warning system.

I had tingling in my hands/arms/legs  and randomly all over my body. This turned out to be B12 deficiency and since the jabs it has gone away. Along the way I was diagnosed with MGUS. The possible B12/MM link is very interesting.

My heart goes out to those of you who have lost loved ones so young, especially with little children. I have come across Child Bereavement UK through my work  and know that they are sometimes able to offer support to families.

Thanks Helen and Keith. Best wishes to both of you – I will keep checking in!

I saw the Dr today. All my x rays were clear and I’m officially MGUS. M spike was 6g/l . They will see me again in 6 months.

The B12 jabs have cured my tingling, but I am still getting random cold patches. They suggested asking the GP to refer me to neurology.

Thanks to all for your support on here 🙂

Hi Jaxx. What can I say? Im so sorry to hear of your loss. I hope you have family and/or friends around you to support you.

Love Rosie x

How are you feeling today? Is it worth asking for the appt they offered you on 9 March?

I didn’t but I had to swear that I wasn’t pregnant (would be a miracle in more ways than one!) and sign a form 🙂

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

R x

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.

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…[Read more]

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

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