Hi Jenni

I would imagine that it means because there are no more 'treatment' options for you to try at the moment, that they will now try to 'manage' the condition; which probably means they are going to have have a plan to try and deal with the symptoms as they occur, rather than trying to modify the disease or change the T or B cells formation.

You might want to write down all the things and drugs that helps with the symptoms - and make sure you get whatever you want of these (ie OT, physios, care help, morphine etc). No doubt they'll mention trying out any new drugs that are not yet licensed... so you'll have to think about whether or not you want to be a guinea pig.

I know this is really heart-breaking and disappointing (medically speaking!) - but medics are not taking into account prayer and God - which we know is and who is far greater!

lots of love and a very big hug going your way

Anne xxx

hi Jenni,

can't give you any answers .. but would like to send my love and support to you as you go through all this,

Suzanne x

Hi Jenni,

I hope it means you get a lot more support from the hospital than you have had so far, with access to physio, hydrotherapy, and anything else that will help to manage your condition.

Sending lots of hugs.
Love, Doreen xx

Hi Jenni

Sorry to hear that you have reached this stage in this horrible disease and hope that the hospital will be helpful in offering all the pain management support etc that is available.

Will be praying for you.

Best Wishes

Sue

Hello Jenni

I would think that it is what Anne said, ways of helping with the symptoms being like you said that at the moment there is no viable drug option available. Fingers, toes and everything else crossed that a new drug is just on the horizon that will help you.

Hope that they can put a care package together just tailed especially for you.

Sending you love and good luck for Monday.

Paula xx

Hi to everyone!

I have my emergency appt with consultant in the morning and have the wobbles actually. The fact is the hospital it utterly hopeless at communication. If I wasn't with it, I wouldn't ever have appts for anything rheumatology wise at all. There is just no follow up.
We have tried many times for an mdt meeting, last time matron of the hospital ward tried and if she can't get a response no one can.
I cannot see them doing any better than they are as they as simply hopeless.

I do have care hours from ss.

We are just having dfg building work here and a wheel chair accessible car. All of which will make life easier.

I don't know about a lot of things but in amongst the middle of it I know GOD is good and I am immortal until he says otherwise so intend living accordingly!

Jenni xx

Hello Jenni

Hoping things are going well for you today thinking of you

Thinking of you Jenni, so much hope of a positive outcome for you.

Julia xx