Re： Re: Joint Pain with EN/ GR: I suspect PG!

[Guest guest]

Hi Calvin,

Amputation? that sounds bad!! Where/ are you not scared?

and how did they discover that the bloodvessels where blocked? is this the

doppler-test?

In august i had a dopplertest, and it was ok. But i'm going to put it on my

question list for the dokter again.

I know that they are going to check my blood today: the bloodcells which closes

wounds where (to?) high... they want to check if this is just now, or all the

time... can these cells also block vessels? Hmmmmm, what causes blocking of the

blood vessels anyway....cholesterol, infection, something else?????

about the pain and the painkillers: they gave me painkillers not for the

nerves, but 'normal'ones.... so if the pain is not from the vessels, but the

nerves (pressure bloodvessels to the nerves), they might gave me the wrong

painkillers....

today there is less pain, but the day just started here. however, it is a good

start

waiting for the dokters now...

Thanks for writing,

GR

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> > > Luke and ,

> > >

> > > Thanks for the info. and sorry i do react so late...

> > > The pictures I placed: the hospital told me EN (they took a biopt from my

> >hand, there where also red/purple places in the beginning of this year). they

> >gave me prednison and sulfasalazine. I stopt the sulfasalazine because i

could

> >not stand it. Then the prednion went down and the EN came back. At that time

i

> >was in hospital for a second opinion and the first pus came out. they took a

> >biopt an said EN, but we are not sure. we have to do another biopt... (i

started

> >sulfasalazie again)in the meantime more pus came out and i could not

walk/stand

> >anymore. The ambulance took me to the hospital. When they made the biopt,

they

> >where shocked: a lake of pus came out of my ankle. the fat-tissue of my ankle

> >was just gone.... I was 2 weeks in hospital and starting to 'walk'again. They

> >told me it was called reactive neutrofile dermatosis (hope this is english),

but

> >gave me no other name. It seemed that the prednison and sulfasalazine worked.

A

> >few weeks later they lowerd the prednison. Two weeks later I noticed al the

> >alarm-signs that it was not going wel. The hospital could not see anything

and

> >did nothing. Later they raised the sulfasalazine. In the two weeks later i

> >called again that it was not going wel: a lump was activated. They raised the

> >prednison a bit. 5 days later the pus came out again they doubeled the

> >prednison but it was not ennough.... a few days later they raised it again

and

> >wanted me to keep in hospial, but there was no place. now (a week later) i'm;

in

> >hospital and my leg looks awful, with pusplaces, just like the kraters on the

> >moon. now its clear: it is PG. i'm still on the same medication and every day

i

> >get a bandage with medicine on my ulcers for half an hour (neoral). It seems

to

> >go 'well'... at this time. It still looks horrible but the pain is a bit

less.

> >They think I have to stay for about 4 weeks in hospital.

> > > Feel lonely. I do not people who have PG. Hospital told me i'm the fifth

one

> >they are seeing with PG this year.

> >

> > > I want to know things about PG, but do not want to google. I cant stand

the

> >horrible pictures and stories. I need to be/think positive. How am I getting

> >myself trough this?

> > >

> > > sorry or the long mail and my bad language.

> > > Greetings,

> > > G R

> > >

> > > p.s. i have foto's from today, but cant place them from here...

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