I am sure that the tablets that you have been prescribed for cramp are the right thing BUT if they don't do the job ask if taking Coenzime Q10 would harm you in any way.

They were suggested to me by my cardiologist when I started having cramp because of taking betablockers.

When Stephen (mm husband) started getting cramp we asked if he…[Read more]

Stephen (mm person) has very achy legs. He keeps us both awake half the night because he cannot keep them still and I (being a horrid person when I don't get any sleep) want to hit him.

The aches seem to come with this horrid ney ba****d illness.

Gillxx

Hi Helen this is Gill. I really wish I had kept a copy of the diary/blog thingy that I put on the mm uk site when Stephen had his first Stem Cell Transplant. I have asked the web team if they are able to retrieve the old site info but I think they must be busy with other things.

Maybe I'll email them again and request that they search a bit…[Read more]

I have not yet found Laura's post but hope we can all help with some information Gillxx

I am sure that your Dad's medical team will make sure he has no pain. My Dad died quite a few years ago at 75 I was told at the time that "pain is not allowed on this ward" and I was very grateful to hear that.

Very best wishes from Gill

Hi
Sorry for the delay but only just read your post. If it helps my level has gone both up and down in the past (by quite a lot) and I often thought it was when I was very tired or under more pressure at work.
Hope your getting some answers – it´s difficult to ask when they always seem so laid back but remember they know all about it and we…[Read more]

Hi Jet

Thank you for taking the time to reply at such a time. So pleased the ice cube trick seems to be working for you so far. Sorry to hear you had such a poor time of it with Revlimid – to be honest I´m not enjoying it much either but do have the occasional good day when I wonder what I am whingeing about and feel very optimistic!…[Read more]

I am blubbing now you lot!!!!!!!! I sit here in the middle of the night/early morning and catch up with all these posts, and feel so privileged and lucky to have so many people to chat to, moan to, share fear with, take from and give too.

A brilliant post heading Eve but you owe me a box of tissues:-( Gill xx

PS to Sarah please keep in touch…[Read more]

No wonder he was missing a tooth He must have bugged someone 🙂

Easy enough to say but I think action is needed a brouhaha (sp? what a lovely word) is needed. Quiet firm words and refusal to leave the hospital just may make them stand up and take notice.

I do hope things improve soon Gill xxx

Hi Gina

My mm husband (Stephen) had terrible breathlessness for a while. They did check it out but were not unduly worried as it seemed to be par for the course. It has now passed and he is not gasping for breath at all. I wonder (no medical knowledge what so ever) if it is the cocktail of drugs that spark it off.

Stephen's drugs have been…[Read more]

Sarah I am so sorry that Gordon is so unwell. You must both be relieved that he is home.

There is so little that the people on here can do for you but I am sure that you know that we are all willing Gordon well. Whether through prayer or kind thoughts.

Gill xxxx

Hi Keith

Stephen (mm husband) has not long completed his second SCT. To be honest it is "one day chicken and the next day feathers" but he is improving all the time. Hope you are back on your feet soon Gill xx

PS for reference I spent some time in Ypsilanti Michigan in the 70s. There were a great many people from Kentucky who had moved to…[Read more]

Hi Amelie

I do wish I had some answers for you I know that you are not resident in the UK. My memory is not good but I think you are in Holland??

I am sure that you would get help from the mm information line which is a freephone number from the UK but I have no idea if you can access it from other countries.

As for attending…[Read more]

Hi to both new posters and sorry you are here. My husband has mm, diagnosed in November 2008 aged 53. He has just had his second Stem Cell Transplant as he relapsed. Fingers crossed for this one.

As for hiccups This stupid remedy works every time but you do need somebody to help you. Drink a large glass of water from the wrong side of the glass…[Read more]

Hi Lorraine
Thanks for the help – glad to hear that things will get easier. Hope you are feeling well now. (Our good news hasn´t sunk in quite yet – just hope it lasts)

Best wishes

Love Carol xxxx

Thanks Helen

I seem to be tolerating it a bit better this week – thanks for the info.
Best wishes
Carolxx

Hi Helen
I had my SCT in February then we had to wait 100 recovery days at which point they started me on Revlimid again. I am now in month three at 25mg and although tired and in some pain etc. not too bad considering what it is doing for me. As you will see above in my reply to Colin my paraprotien is at 0 at present – we just can´t quite…[Read more]

Hi Colin
Just heard that my paraprotien is at 0 !! Can´t quite believe it and am hoping it´s not a "fluke". Glad the dex takes away the back pain – I have had that before the SCT (it made me think I had superhuman powers and was cleaning kitchens etc at 3 am in the morning) but not since – perhaps I could do with some now to perk me up!
It r…[Read more]

Thanks Tom, Pleased that you also feel like keep on "giving it a go". Sometimes I can feel my family´s disapproval when I try to do the things I did pre transplant – but the more I try the more I seem to be achieving – rather like you. My daughter says I do things now that lots of 56 year old´s have never done so why don´t I just try being a bi…[Read more]