Always a fight

[freakyschizogirl]

Yeah i know...i thought i had a choice too...funny ay??

I'll wait til i see him in November and then ask to refer me. And then i'll be free.

[eileenv]

I went to my Gp and said she can't refer me as it is out of pct trust she said my rheumy could bot i don't hold on that one. I had written to him but good job i never posted it yet, i see him tomorrow. GP said he is a very goos rheumatologist but she knows how very rude he can be. Only other option is to write to the trust and see if they will fund me, all about money as usual

[freakyschizogirl]

there's always St Thomases...but i suppose that would be out of the PCT too??

[eileenv]

No Sam, i think i would be okay there but my heart was set on addenbrooks. I suppose now if i don't have the biopsy they will see it as not cooperating. because of the terrible weekend i had with pain as soon as i took an 10 of pred i was able to get about it's such a low dose i'm on.

[freakyschizogirl]

Aww i know. i'm thinking they will say that to me now...

[DEE]

Eileenv i was in the same situation with ENT consult , my first one was not willing to do anything because he got a negative biopsy even though there was obviously something weong .kuckily i had gp support and we looked into ent consults at the same hospital which he got an emergency appoinyment with
he was much better and supportive i guess what im trying to say dont give up on what you want . i spent nearly eighteen months listening to medical profesionals (sp)saying we dont know but since ive been comming on here i now stand up for myself and ask more questions
if any one says i dont know now , i always say what are you going to do about it then
it stems from an earlier stay in hospital may 09 when a ward sister said i dont know why there keeping you here my daughter suffers from nose bleeds and she does not make a fuss !!
recently went back on same ward when i i had blood clots in my lung had a room on my which she never came near !! even when the other staff who knew me all came to say hi
so now with diary in hand and Sangye Elephants etc advice ringng in my ears i ask for answers more often
thanks guys DEEx

[freakyschizogirl]

it stems from an earlier stay in hospital may 09 when a ward sister said i dont know why there keeping you here my daughter suffers from nose bleeds and she does not make a fuss !!

OMG!! i had that when i had my first ever major nose bleed. When i was just calmly eating my breakfast before work and then flowing river of blood. I was terrorfied. Even tho all the docs said it was nothing, probably high blood pressure (i've never had high blood pressure).

They did make me feel like i was making a fuss about nothing. Whats a little blood??

[DEE]

hard not to make a fuss !! when your bed is covered in blood when you wake up during the night took more notice the next night !!! even transported there and back to another hospital to find out what was happening

[freakyschizogirl]

blimey Dee. That sounds awful. How can they say you're making a fuss when your bed is covered in blood. I normally wake up if i have a nose bleed in my sleep.

[eileenv]

Thank you Dee and Sam, well of i goes for the rheumy's appointment and took a friend with me, i won't go into details as it is to much to say, but it became rather heated. My anca has always been weak poswith the pr3 at 32 and today it came back neg, but the crp and esr are still at 50. I played to much on how many phone calls i had to make to the admin staff 10 in all becauce they lost the urgent referal it was when he said i can't help with what goes on there it becauce of 15 years of a labour gov so i gave to him saying there no comunication between the two of you he blew a gasget saying you always get a copy of my letters i said i know i do but no one else does!!. Then i asked if i could have a referal to Addenbrooks, he said there's no need to go there we have perfectly good vasculitis team at Queens (thats our main hospital i see him ar a local community hospital i see the ent at Queens) He is the clincal directer of queens and can be quite overpowering, i asked how many weggies he see's and he said 30.He examined me really well and done an ecg as my pulse was132 but my pulse has been high ie over 100 for a few weeks. So the crunch is he want's me to have the biopsy as me said he will be treating me blind and how toxic some of the meds can be.