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

[Guest guest]

Hello Calvin,

The doctor told me that the bloodvessels around the ulcers are inflamated but

are not blocked. If they were, there would be another type of wound (one big

place instead of more holes with tissue between...?). She is not going to check

it with all kinds of tests, because she is clear that this is not the problem.

[by the way: do you know the feeling of a kind of warm (glowing)stream through

the sole of the foot? Only a stream, not through the whole sole... It feels

pretty, but is not ok. For me it's a sign that PG (or before EN) is starting to

flair up...

I think maybe it has to do withe the bloodstream (?). the doctor does not know.

she said maybe the nerves....i'm not convinced...]

So, the pain: inflammated vessels - bloodpressure - swelling - nerves.

I found out that my heavy painkiller (oxynorm/oxycontin) is not that heavy, and

not for the nerves....

But the doctor does not want to descripe a nervepainkiller, because she thinks

it will only do something for the 'big' nerves (when one has hernia etc.).

But: the pain is going away The dokters think its going better with the

ulcers. And i agree, i can feel and see it!

I still cant walk on my leg, but hanging it out of bed is going better and

sitting on a chair with my leg up is ok for a few hours a day now. They are

going to lower the prednison 'quickly´now, so we will se what happens....

Thanks for sharing information,

GR

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> > > Luke and ,

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> > > 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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