clear for 10 weeks and now it's back :-((

[Guest guest]

Hi all

I don't think I've posted to this group apart from when I joined but

I do read the digest every day!

I was diagnosed with Sarcoidosis and EN last summer and put on a

heap of painkillers and Prednisolone. I managed to get off the pred

in the middle of January, having once had to up the dose again due

to a flare up of the EN. I've been clear of it since then - until

this week. I was due a check up with the Dr at my local hospital

and just as I was getting ready to go out for the appointment on

monday, there they were - red, blotchy lumps back again over the

lower left leg. As one of my friends said, at least it happened the

day I was seeing the doc rather than the day after!

Upshot of it all is that they want me in on Friday this week for a

bronchoscopy and to do a biopsy. They took more chest xrays this

week and also re-ran my breathing and gas exchange tests which were

down on last time and then a load of blood tests.

I am not looking forward to Friday's visit - I hadn't really grasped

what was going to be done until Doc said he'd have me in there for

1.30pm and I said to him 'Oh, that's good, lunchtime - I'll be able

to pop over in my lunch break and just be a bit late back' That's

when he informed me I wouldn't be going back to work after

my 'sedation' -- Oh, brilliant, no driving (hubby doesn't drive and

neither does my mother, my stepfather is a taxi driver but has

reacently had major head surgery so is not allowed to drive!) so

reliant on friends to ferry me to and from the hospital.

Sorry to go on moaning so much - especially as it's mainly because

of the Sarc rather than the EN (I've moaned to the Sarc group too so

you're not alone!) It's just that up to the beginning of this week I

though I had these things pushed to the back of my life and now

they've decided to rear their heads again.

I'll push off now and have a cup of tea and a pile of biscuits (that

helps anything!)

Best wishes to you all

ps - I love cat pics too! I did have a beautiful black and

white longhair rescued cat for a while last year but sadly I had to

return him to the Blue Cross where he'd come from as he had rather

poor toilet habits that were very difficult to cope with as I have 2

small children. I've since heard that he has been found another

home so I hope he's happy there. I hope to try for another rescue

in the future - Have to really as I have a huge sack of very

expensive special diet cat food in the cupboard!

[Guest guest]

Dear ,

Thanks for letting us know what is going on. I posted your " case

history " to our " Member Medical Histories " Files. Cobalt, who also has

sarc. once said that if were not for the EN his dr. would not have

known what to look for. It is a marker for Sarc. so in that way it

does alert one to that disorder. Once the sarc, is under control, the

EN should subside. I have also heard and read that having EN is a sign

that the sarc, is a milder variety. That's what Franni's dr. told her

and she is doing fine last she posted.

Good luck with the tests on Friday, and let us know how you do

and what the doctor says. I'll be thinking of you and sending " good

thoughts " .

Love,

PS Needing to use up an expensive bag of cat food is a great reason to

adopt a homeless kitty! Actually almost any reason is good. They all

need good homes.

[Guest guest]

this is the problem with all of this.

Everyone thinks it goes away, it doesn't. They call it remission, I call it going dormant and while dormant, it is attacking some other part of the body. I am talking about the Sarc Monster here.

My EN has never gone away. It hits me at least two to three times a year. Now, it never goes and comes it only stays.

Sharon

clear for 10 weeks and now it's back :-((

Hi allI don't think I've posted to this group apart from when I joined but I do read the digest every day!I was diagnosed with Sarcoidosis and EN last summer and put on a heap of painkillers and Prednisolone. I managed to get off the pred in the middle of January, having once had to up the dose again due to a flare up of the EN. I've been clear of it since then - until this week. I was due a check up with the Dr at my local hospital and just as I was getting ready to go out for the appointment on monday, there they were - red, blotchy lumps back again over the lower left leg. As one of my friends said, at least it happened the day I was seeing the doc rather than the day after!Upshot of it all is that they want me in on Friday this week for a bronchoscopy and to do a biopsy. They took more chest xrays this week and also re-ran my breathing and gas exchange tests which were down on last time and then a load of blood tests.I am not looking forward to Friday's visit - I hadn't really grasped what was going to be done until Doc said he'd have me in there for 1.30pm and I said to him 'Oh, that's good, lunchtime - I'll be able to pop over in my lunch break and just be a bit late back' That's when he informed me I wouldn't be going back to work after my 'sedation' -- Oh, brilliant, no driving (hubby doesn't drive and neither does my mother, my stepfather is a taxi driver but has reacently had major head surgery so is not allowed to drive!) so reliant on friends to ferry me to and from the hospital.Sorry to go on moaning so much - especially as it's mainly because of the Sarc rather than the EN (I've moaned to the Sarc group too so you're not alone!) It's just that up to the beginning of this week I though I had these things pushed to the back of my life and now they've decided to rear their heads again.I'll push off now and have a cup of tea and a pile of biscuits (that helps anything!)Best wishes to you allps - I love cat pics too! I did have a beautiful black and white longhair rescued cat for a while last year but sadly I had to return him to the Blue Cross where he'd come from as he had rather poor toilet habits that were very difficult to cope with as I have 2 small children. I've since heard that he has been found another home so I hope he's happy there. I hope to try for another rescue in the future - Have to really as I have a huge sack of very expensive special diet cat food in the cupboard!

[Guest guest]

{I totally commiserate, my case is similar except for the Biopsy. I got

my appointment coming up on friday too. @4:30pm.. what fun, huh? Good

news is, we'll make it! Bad news is .. is... gas prices are still gonna

go up? Okay.]

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[Guest guest]

{Hear Hear! That's ME! uh, Medications for the Erythema didnt seem to do

as well as the Sarc treatments. Dampening the Sarc effect, reduced the

ErythNodes to small pitiful beebee sized little bumps that cower in the

face of health! Mwahahaha, I shall hike again! In fact I need to, this

prednisone weight gain has gotta be worked off before how I look starts

to affect my self-perception. Appointment April Fools Day-after, so any

diagnosis I get will be suspect, lol. Cobalt! You've gone into complete

remission, and cured APRIL FOOLS!> will result in a knocked out doctor,

lol.}

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