hello everyone i was just diagnosed with sarcoidd

[Guest guest]

My pulmonologist said there was mild scars on my lungs is this common with

sarcoids he also told me I probaly had it for a while but I never noticed it

I really can't figure out if I should take any meds the main complaints of what

I feel is muscle aches and joint pain I have also noticed slight shortness of

breath

Any suggestions and any one feeling just the way I feel

[Guest guest]

This is very common with pulmonary sarcoidosis. The shortness of breath is the result of the scarring, your lungs should look like a new kitchen sponge, and ours look like the sponge that needs to be tossed out.

The joint and muscle pain is also sarcoidosis. We get a form of sarcoid-induced arthritis. Most often the docs like to put us on prednisone, which helps to shrink the granulomas (sarcoids) and that can help get the inflammation out of the lungs. It is not a cure.

So far, they don't know what causes sarc and we don't have a cure. So what happens is that we have to have to treat the side effects.

Sarcoidosis is an autoimmune disease, where our immune system mistakes our healthy tissues as foreign and sends out the white cells to fight an infection that doesn't exist. Initially the cells go out, then there is a TNFa and TNFb cell that follows (in that order) to clean out the white cells. Our bodies don't clear the cells as it should and one builds upon the other, eventually forming hard granulomas-- which then changes the structure of the organs involved, and the organs then can't work correctly.

In our MESSAGE ARCHIVES, as well as the LINKS we have a tremendous amount of information that you can use and print out to take to your doctors. You can search by pulmonary sarcoidosis and get a list of posts-- you'll find them so very informative.

We are over 560 members strong, so you are not alone in this journey. Please feel free to ask questions, and we will answer as quickly as possible.

Right now, we have 2 co-owners and 5 moderators-- and we too are living with sarcoidosis. Alll of us are in flare right now, so we're a bit slower to answer than is normal-- but we will answer.

I'm sorry that you had to find us-- we'd just as soon they find a answer to this disease and we'd not be needed-- but since that is still in the pipeline, we're here!

Take care,

Tracie

NS Co-owner/moderator

Subject: hello everyone i was just diagnosed with sarcoiddTo: Neurosarcoidosis Date: Thursday, March 12, 2009, 6:14 AM

My pulmonologist said there was mild scars on my lungs is this common with sarcoids he also told me I probaly had it for a while but I never noticed itI really can't figure out if I should take any meds the main complaints of what I feel is muscle aches and joint pain I have also noticed slight shortness of breathAny suggestions and any one feeling just the way I feel