[janmatthamsParticipant]

 

My husband was diagnosed with asymptomatic myeloma in February  we were wondering how long others have had this before they go on to having myeloma feeling totally confused

[Anonymous]

You’ve come to right place to ask for advice had loads of useful advice and help since I was diagnosed asympotmatic last October when my world fell apart. Not had the easiest of times with my local NHS but people on here have helped me make sense of things and the lovely Professor Cook who we saw privately explained we are all different in the myeloma scheme of things but to go home take care of myself with exercise and diet as one in four people never move forward from asympotmatic to myeloma and there are lots of new drugs and trials in the pipeline. Some days are good and some days are bad but you have definitely found a brilliant forum to help and one thing to use as they are brilliant are the myeloma nurses linked to here . Hugs Helen x

[janmatthamsParticipant]

Thanks Helen, im sure I will be posting on her again my husband has tingling in his feet is this a symptom of mm

we are due to see consultant on the 9th April

[lncoojeParticipant]

Hi there, I was diagnosed on 1st Oct 14 with smouldering meyloma and was still smoulder when I had my last bloods at the end of Dec.  I’ve just had my bloods taken and I’ve got everything crossed i m still smouldering when I see my consultant on the 23rd march.  Re the tingling I have the tingling in my arms and back. This was the reason I went to see my gp in the first place but never expected the outcome would be meyloma. Do you have a support group in your area or can you contact his nurse to ask if you are worried. I was told I could contact them anytime especially when I was worried. It may be worth having a chat with them. Please keep us informed on his progress Jan, we are all fighting together lots of love linda x

[janmatthamsParticipant]

Hi Linda , thanks so much for replying we have not been given a nurse and am not aware of any groups in Chelmsford

so am relying on this forum for support , we are due to go back to see consultant on 9th April so hope all will be made a little clearer this will be Peters first appointment since his diagnosis. x

[lncoojeParticipant]

Fingers crossed its good news and he still smouldering.  I am also on a fantastic face book page for myeloma called UK meyloma support and have made friends with some fantastic people who all support each other.  I have found myeloma .org fantastic too.  I would phone your husbands consultant secretary and find out where you can get your support from, there should be someone locallyxx

[janmatthamsParticipant]

Just joined the facebook page thanks x

[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.

[lncoojeParticipant]

I was told I couldn’t absorb vitamin d I’m beginning to wonder if it related to mm also

[CarolsymonsParticipant]

I also wonder if being vitamin D deficient while living in London contributed to my myeloma developing.
Carol

[lncoojeParticipant]

Hi carol, I live in Yorkshire and not far away from the countryside so I don’t think its living in Lindon but I do think its related to mm x linda

[Anonymous]

Morning everyone , I’m from Yorkshire too born and bred live near Huddersfield so its part countryside and part industry and I asked my doctor as soon as I found out I was smoldering about my Vit D levels because I had been told by a friend with cancer that having a good level helps if you need chemotherapy, my levels were normal so that was a relief the hubby says its probably because I love to be outside all the time and in my shorts from April to October  hugs Helen

 

[HarmonyParticipant]

Hi Jan, I received my asymptomatic myeloma diagnosis on the 7th of October 2013 aged 40 – a date imprinted in my brain! The good news is that I’m still smouldering 17 months later. I’m learning that anxiety about the future is wasted time and energy. Smoulderers have the opportunity to grab life by the horns while we’re well. Here are the changes that I’ve made: Reduced work to part-time, done a few writing courses, planning to do a counselling course soon, drinking 3 cups of green tea daily, taking selenium every other day, eating copious amounts of kale and spinach, taking turmeric twice daily, reducing meat consumption – particularly processed red, taking aloe vera daily. Why all these changes? Simply because I need to feel that I’m trying. Even if it doesn’t make the blindest bit of difference, I have tried. The saddest part for me is the thought that I may not be here to see my children reach adulthood or even adolescence for that matter – that absolutely kills me more than anything else. This thought sends a crippling pain from my heart to my feet.

[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

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