[rosie1961Participant]

Hi Michelle
I also have a diagnosis of MGUS. Mind came about because I was getting a strange cold feeling in one leg. Dr ran loads of tests but nothing showed. When I mentioned my dad had MM, they tested me and picked up the MGUS.
That was a few years ago. Now my leg feels cold less often but sometimes I get a tingling/burning feeling there.

When I got tingling in my hands/scalp I was diagnosed with B12 deficiency. I now have B12 injections every 3 months. I

Will be interested to hear what other people say and I hope yours is resolved

[rosie1961Participant]

Go for it Tony! We are all rooting for you.

[rosie1961Participant]

Hi Tony
Sorry to hear about your diagnosis. You are definitely in the right place for support.
My dad was diagnosed aged 66 and lived a mostly active life until he was 82 (2017) that was without stem cell transplant and other treatments that have progressed since then. I’m sure others also have encouraging stories.

[rosie1961Participant]

My dad had MM. I had some random feelings in my right leg, so I mentioned this to the GP. I was subsequently diagnosed with MGUS aged 54. No idea if this is genetic or just coincidence. My PP is very low so I am tested once a year.

[rosie1961Participant]

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.

 

[rosie1961Participant]

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

[rosie1961Participant]

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 times. There are research articles about neuropathies featuring with MGUS. It seems to me that it is not always symptomless, but that the significance is just not yet understood.

 

 

[rosie1961Participant]

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.

[rosie1961Participant]

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.

[rosie1961Participant]

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.

[rosie1961Participant]

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

[rosie1961Participant]

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 🙂

[rosie1961Participant]

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

[rosie1961Participant]

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

[rosie1961Participant]

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 🙂

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