D***** NHS!!!! sorry this is a rant

[Bonnie]

JJ,

This is terrible, you would like to think that at any sign of a tumour, your daughter would be seen by a specialist as soon as possible.  My prayers are with you and your family.  Thanks for your thoughts.

Please know that we will all be thinking of you.

Trudie

[Patze]

Hi JJ,

I'm so sorry to hear about your daughter, wow, four months?  That's amazing!  Just, wow.

What are the doctors going to do for your daughter now?

Please pass her my best and I'll keep her in my thoughts and prayers -

Patze

[agatha]

So sorry to hear about your daughter JJ - hope she gets the very best treatment now.

Bonnie - it all sounds so hideously familiar - the endless mix ups with appointments, the not being listened to, the not being able to choose which doctor you want to see, the indifference and lack of interest, the over reliance on unreliable tests rather than looking at the whole clinical picture....and in the meantime you lose whole chunks of your life because you feel so dreadful. Grr!

I have a diagnosis of SJS on the basis only of high ANA levels - I don't have antibodies specific for Sjogren's - my rheumy diagnosed on the clinical symptoms (bless him!) so don't give up.
love
Agatha

[Bonnie]

Thanks all,  I am trying to be positive and hopefully soon I will get to see someone.  Just trying to get on with living as much as possible.