hi there! im fairly new, i've known i've had this since april.

theres power in knowledge so is there anything you would like to know?

it also helps to know your not alone so i'm here if you need to talk.

big hugs and welcome!

I am so happy you replied to me. My name is Angela Clark and I live in Vincennes In. I was hospitalized on Feb 17th for a lung biopsy because a cat scan showed a nodule in my rt. lung and cloudiness and emph. Also, a few enlarged lymph glands. My dr. said after surgery that he believes it is sarcoidosis, although my results of the biopsies arent back yet. He wasnt to comforting, he said I am going to be like an 80 year old woman pulling around my oxygen tank and that basically I dont have much of a future to look forward to. I was devistated! I am 46, going to be 47 the 10th of this month and I am not ready to die yet! I figure his attitude comes from that I am a smoker, trying to quit by the way, but he insinuated that I did this to myself by smoking. I dont bekieve that this is true after reading about the disease. Anyway, I am home now , and they really havent told me what to expect now. I havent had my follow up appts. yet to get in more detail about this. Before I started having short. of breath I had had a lot of pain in my body, especially my rt. leg and hip. I had a cat scan of my back and thet said I had 2 disc pressing on nerves and they put me on neurontin. I now believe that all of this pain has come from this disease. I also have breakouts on my face sometimes to the point of scarring. They sent me home with oxygen but since coming home my oxygen has been great. Could this be because I am taking prednisone? I am on a tapering dose that will end at the end of March and I was wondring if I will need my oxygen then? Oh, and they said my liver is in enlarged also. I have been trying to research into this as much as possible and I read all of the organs it can effect, so I did make an appt with my eye dr. because I had been feeling like my eyes were giving me some problems and he said I do not have sarc in my eyes but they had gotten worse since my last appt and had to change my lenses. I do have cataracts though. I hope I have not talked your head off, I am just in the dark some and would love any info I can get. Thanks for replying and big hugs to you too.

omg i wrote this big long reply and then my internet had a hiccup poof gone!!

I'm sorry your doc was such a jerk in the way he broke the news to you. He's not well informed smokeing DECREASSES your chance of getting sarcoid, he's missinformed.

I think its safe to assume your aches and pains are from the sarcoid. I have them in my joints and muscles and i have inflamatory arthritis and myositis as a result. It was misdiagosed as fibromyalgia for a few years.

The rash on your face sounds like lupus perinio, its a common sarcoidosis rash on the face. It can be disfiguring if you let it go too long. prednisone can help but i would see a dermatologist or maybe a rhumitologist can treat the rash and joint pains ? just a suggestion

with sarcoid you have alot of different doctors because there is no one doctor that treats this diease. Its frusterating so sometimes it takes a while to orchistrate a team of doctors that are good with you and can communicate with eachother well.

I have 5 docs to treat my disease

nerologist
rhumitologist
pulminologist
optimologist
and pain managemnt doc

Its important to take good care of your eyes with this desease so even tho there's no evidence in your eyes right now its recommended to get them checked anually.

I understand how scary the future can be. An oxegin tank is probably not what you pictured.

The two worst placed to have sarcoid is the heart and the brain.

prognosis for ppl with it in their heart is 5 year and brain is 10 give or take.

I have it in my brain, spine, joints muscles, eye, skin, i think thats it LOL but no lung involvemtn here. I'm a rare case.

If you need and ear i'm here and we can learn about this together, i still don't know everything thats for sure.

keep us posted on how you are doing

hugs

Hi! im new too! But theres is tones on info in here so I keep comming back its always nice to know your not the only one fighting this thing :) sorry to hear about the horible doc that gave you the news. blame genetics not smoking :). theres a long history of emphesema and rhumatiod arthritis in my faimly and Im sure that some of that was sarc that wasnt diagnosed. Let us know how your test go. and if you got the scar on the neck, dont worry it almost disappers in a year, mines just a pink line you barely notice but it made me quite depressed when i first got it. keep your chin up!