Hi Sharon

It does sound like a very rare condition,and you do need to find people who have the same condition,for support and how they cope with it,do ring Ellen if there is some one else with related conditions she might be able to put you in touch with them,plus if you are going to have a SCT you have to the right site for info.
I would also…[Read more]

Dear Sara,
Yes, the serum free light chain assay( which is expensive ) is perhaps the best test to exclude MM but it could well be abnormal with chronic hepc but not of a similiar pattern to mm when either the Kappa or lambda chain will be markedly raised but not both (gives an abnormal ratio).(btw I assume you stil are awaiting the availablity…[Read more]

Dear Karen.
On a more postive note ,Ive been to New Zealand twice since diagnosis in 2008 a( my youngest son is a physio out there ) and visited the lord of the rings sites!My travel insurance excluded/s problems from smm which is more risky when ive been skiing om many occasions .Life goes on between the tests!
The risks of developing myeloma…[Read more]

Hi Jean

Glad to see things have improved,make the most of this period and have a lovely time Eve

Hi S

Light chain deposition disease???

I must say it’s a new one for me,so I can understand why you feel so isolated,seems to be a mixture of Bence a Jones light chains plus amyloids .
I know from my husband his IGg bence jones light chains,show no protein,but it effected his kidneys.with Amyloids there are only 600 cases a year and only…[Read more]

Hi David

Why is attendance allowance not an option??????
My husband gets AA he is 69 had it for three years,it’s not based on how much money you have,it’s your right,day AA is about 38 pounds,full AA is 78 pounds,if you have a carer who does not earn any money you can arrange a carers allowance,I do not get it as I have a pension.

I would…[Read more]

Dear Sara.
I am consultant gastroenterologist (docmike).In 2005 I sustained a needlestick and contracted hepc(genotype 3) and was succesfully treated with pegifn/ribavirin. Retrospectively i did not have mgus at that time because i had some serum samples available to retest . In 2008 I was diagnosed with smouldering myeloma .
Yes…[Read more]

Dear Karen,
One last point, on reviewing your reply ;tingling in the feet and hands (called parathesiae) if persistent (>2 weeks) could be (emphasis on could ) be an indication of a peripheral neuropathy which is not a feature of smouldering myeloma or paraproteins (unless very high with hyperviscosity )so this might be worth mentioning to your…[Read more]

Dear Karen.
By now you will have received a lot of information to answer some of you concerns and clearly you have also been online searching the literature for information.Multiple myeloma is a complex disease and Multiple bit is well deserved because it is a very heterogenous condition such that it is not an exageration to say every patient is…[Read more]

Dear Karen ,
Next instalment!
I also know a lot about heamochromatosis but to be brief ;a blood test to the local genetics lab for a HFE gene status will clarify the issue and I suspect your high iron/ferritin may be related to bordeline anemia?? in which the bone marrow does not utilise the iron as it should(my ferritin(an iron containing…[Read more]

Dear Karen,
Ive had smouldering myeloma for nearly six years and happen to be a consultant gastroenterolgist.But I am not surprised that you are confused about your diagnosis and its management .
When I was diagnosed after a routine blood test I had a skeletal survey and a bone marrow and after the latter was sent to a special centre ,I was…[Read more]

Hi Keith

Well done you 🙂 and you can be forgiven about memory loss after what you have gone through

Stay well my fiend its all Onwards and Upwards now

Tom Onwards and Upwards x

Hi Clover

well I think its all ben covered by the great posts above.

Its a roller coaster of a ride for your Dad am sorry to say but he will get through it, you all will, you dont say how old your Dad is ? nor how old you are ?

Good Luck to your Dad on his road to remission.

Tom Onwards and Upwards xx

Congratulations to you Both am well chuffed for you both.

its what we all aim for,I hope Graham is now drug free for many a years its a great feeling I had four years drug free remission, we went and done what we wanted to do with no restrictions.

Get out their now and enjoy Life, once again well done and have a great time.

Love Tom Onwards and…[Read more]

Hello Frances

My husband, not a MM sufferer, had dizzy ness when they put him on Benza……… He had to come off it.

I bet it is the drugs making your mum feel heavy. Hope things improve soon.

Love to you both.

Mavis x

Hi Angela

So glad for you both. Enjoy your future. It’s great not having to work!

All best wishes for a very long remission for Graham.

Mavis

Hi Helen

So glad to hear your blood readings were better this time. It is a roller coaster isn’t it! I remember you saying that once before.

I will hope and pray that the drugs will do the trick and bring the numbers down. I can see that the thought of an allo is so enormous. I do hope you find another way through. If only you can stave…[Read more]

Hi Sarah,

I am glad to hear the DT Pace went smoothly but so sorry to hear M’s temperature spiked and he had to be admitted again. It sounds very scary and I do know what you mean about the parking. When Phil’s temperature spiked we got a cab to the hospital and I think the cab driver was terrified when he realised how unwell Phil was so he…[Read more]

Hi Les

Just read your post. So sorry for your loss especially as it came so suddenly. I suppose one comfort must be ( and I say this from a patient’s point of view,) at least your a Dad didn’t have months of fighting off the inevitable.

Be kind to yourself. Loss doesn’t go away over night, how can it. Keep bringing good memories of your Dad…[Read more]