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Neurological treatment

(2 Posts)
weegiemum Sat 16-Feb-13 16:40:27

I have a nasty progressive neurological disability called CIDP (chronic inflammatory Demyelinating Polyradiculoneuropathy). Basically I can't feel or sense my hands and feet, lower legs and face.

I've been researching online and found there's a treatment in the us they're hoping to bring to the uk which has 100% cured this. However the treatment is a month of chemo to kill off your immune system, then a re-transplant of your own clean cells, then 6 months to a year of immunosuppresant therapy, not being able to go out (eg work!) etc.

I can't imagine a month without being able to see my dc (I've got 3, they're 9,11,13). I hate hospital with a passion!

But if it meant that by spring 2014 I'd be running about with my dc, loving life, in no pain and able to do all the things I currently can't, I'd give pretty much anything for that!

It's going to be a year at least until it's offered locally (I'm not prepared to go to London for it).

Would you put your dc through the worry and isolation? Or am I just being selfish?

MrsDeVere Sat 16-Feb-13 16:46:46

My oh has MS.
If there was a treatment that would cure him or even improve his condition, of course we would go for it.

I would want to know a lot more about it though. What type of chemo for example.

You would possibly be able to get out whilst on immunosuppressants. It's usually more a matter of being mindful rather than total isolation

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