[cygnetParticipant]

Hi – sorry to be slow in coming back to you.

As well as considering seeking another opinion on your SM, have you thought about seeing an osteopath, physio or chiropractor? I suggest this because my regular osteopath/physio sessions & exercise help me manage my pain. Please bear in mind issues with your upper back ( cervical/thoracic spine) often cause/refer pain into the lumbar ( lower back ) area as the body tries to adjust itself. But of course we are all ( wonderfully) different!!

It sounds like you feel very isolated – partly because of the geography of where you live but I also think- sadly- our diagnosis makes us feel isolated ( well, that’s my opinion……)

I also think this sense of isolation isn’t helped by the massive discrepancy in experience & expertise we encounter in the medical world. I am seen by a conscientious  but very general haematologist  in a small local hospital in Kent but if I move on from monitoring I will definitely ask for a referral to a myeloma specialist. I am also fortunate as I have an excellent gp. Perhaps it would help you if you could feel more confident about at least one member of your support team?

I hope you get some answers & start to feel better soon,

Love & hugs,

C xx

 

[cygnetParticipant]

Hi – I’m sorry to hear you’re suffering….

Can you describe the pain for us? I ask because I too have smouldering myeloma & quite alot of joint pain – including back pain. I’ve had neuropathic pain in my abdomen /pelvis – is this similar?

What sort of arthritis do they say it is?

I do feel for you because chronic pain is so tiring & it’s also a constant reminder of SM being in our lives.

C x

[cygnetParticipant]

Hi Vicki

I’m sorry to hear you & Colin are having such a difficult time with this. Just to let you know the nurses on the Myeloma UK helpline can e-mail you a list of specialist centres with the leading myeloma consultants.

I hope this helps,

C x

[cygnetParticipant]

Welcome home Ian!

I’m glad all has gone well after all your worries.

Love & hugs to both of you

C x

[cygnetParticipant]

Hi – so pleased to hear this 🙂

I was wondering about sending you a private message but didn’t want to intrude. This condition seems to heighten everything which in turn adds to the stress doesn’t it?

I recently had pneumonia which I wasn’t overly worried  as I have an excellent gp . But then the worry started – was something other than my stressed immune system responsible & then the chest x-rays seemed more significant….. then I needed a mammogram for routine screening … again the ” what if” thoughts ….. So when I read about your situation  it resonated & I really felt for you.

So glad all’s well

Love & hugs,

C xxx

[cygnetParticipant]

Hi Chrissie

So sorry to hear this but I’m glad it’s all being checked out.

I’ve got everything – not just my fingers – crossed for you.

Sending love & hugs,

C xx

[cygnetParticipant]

Hi Andy,

Just wanted to say I find your posts inspirational!! Thank you for being such a positive person & for bolstering so many of us along the way.

I’ve got everything crossed for your blood tests when you get back…

Love & hugs,

C xx

 

 

[cygnetParticipant]

Happy holidays – chill & enjoy!

Love & hugs,

C xx

[cygnetParticipant]

Hi  – as with so many myeloma related issues, it seems to be very individual as & when you cross the boundary from MGUS to Smouldering & then onto treatment. The more I read & research, the more I find ” grey” areas in terms of this.

I have moved from from MGUS to Smouldering although at my hospital they don’t use Smouldering generally as a category ( interesting approach I know!) They also don’t monitor light chains). However if you ask lots of questions they will acknowledge Smouldering status – their approach is to monitor/watch & wait the same. It was my bone marrow biopsy which tipped me into Smouldering but as my pp was 27 on diagnosis apparently I would never be  have been returned to GP monitoring even if the bmb had come back below 10 per cent.

So in essence I would say it seems to be a numbers game unless you get CRAB symptoms.

I know your appointment is tomorrow so no doubt you are worried  & anxious today about what that will bring – I will be thinking of you & have everything crossed for you.

Love & hugs,

C xxx

 

[cygnetParticipant]

Hi

Thinking of you & hoping all goes well

Best wishes,

C x

[cygnetParticipant]

Hi Gill

Thank you for sharing your day of celebration with us. I believe when people pass away their legacy is what they leave behind – memories are  an important element of this. You chose to make more memories that Stephen is part of for his special birthday & that is a brave and amazing thing to do.

I’m glad you made the most of the day – well done you. Enjoy the flowers.

Love & hugs,

C xx

[cygnetParticipant]

Hurrah! Well done you!

Love & hugs,

C xx

[cygnetParticipant]

Hi Jan

Sorry for slow reply – not been around on the forum for a while. I have the tingling you describe – in fact the neurologist I was referred to investigated it & that  was what led me to  haematology for myeloma tests. etc, etc. There’s info on this wonderful website so check out Peripheral neuropathy.

There are treatments for it which can help so do talk to the consultant. I exercise & take  prescription anti inflammatories when needed but you can have a stronger drug regime if you want. Stress makes everything worse but let’s face it, it’s hard not to be stressed by this situation!!

Hope this helps,

C xx

[cygnetParticipant]

This is so awful for you  – not to get the answer you wanted ( current pp) after waiting & worrying.

I hope you can do something nice -for yourself- tomorrow ( Thursday)  because you deserve it.

I know it’s not much consolation but it is good news that your Hb & platelets are good – long may that last….

Love & hugs,

C xx

[cygnetParticipant]

So so sorry to hear this.

Have you got an appt for the paraprotein to be done – you can always ask your Gp for this.

Have another chocolate muffin for me…

Love & hugs,

C x

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