Hi, I feel as though I shouldnt be posting my messages after reading what Jenni is going through at the moment, but said I would give a quick update of the appt today. It was a test called aggregation/neuclotide they take 4 big phials of blood, then compare it with a volunteer nurses blood to get the results. Next appt in 7th June, so wont know anything until then.

Hi Julie, still not sure really what its all about. The only thing the nurse said was that when they look at platelets if they seem abnormal then they need to do this test. I asked what happens and she said its compared with "normal" blood from a volunteer nurse, and that the one doing mine was to be the volunteer. She then said to come back in 3 months as by then they have the results. So clear as mud really!!!
Feeling better re the heavy feeling, but I have decided to leave the hydroxychloroquine until this evening instead of the morning. Dont know if it makes any difference, but today its better, and i only started on it on Friday.
Still have the usual aches and pains, but I think the pred doesnt really work for me at this level, but obviously dont want to go up in dosage. The nurses were meant to get back to me about the dose, they said to keep it at 15mg for now, but heard nothing since. Will have to leave another message.

This is so wrong. Is the reason for the delay in giving you the results down to the time it takes to get them or to do with your next arranged appointment? It is most unfair to throw things at you and not to explain properly in a way that can be understood. Perhaps your GP may explain what this is all about rather than you worrying about it.

Take care,

Eleanor x

Good Barbara! You don't need any more stress at this moment in time. An explanation of what it is about would at least give you some peace of mind.

Eleanor x

you post when u need to its ok we all need support,
oh barbs no not on at all,yes good diea amke gp appointment fro them to explain it betetr to you and also chase up the results dont see why they cartn help out june is awfully long.
keep buggin nurse.
hugs
melly