Sarcoidosis-Lung Disease

[deemarieb]

Sarcoidosis is a lung disease, but I almost feel like it's growing more. My breathing is tight all the time. I have no medical insurance, but I worry it's getting worse. How would I know if it's growing & when it's urgent to get into the doctor. Steroids was a very bad medicine for me. What can I do to feel better? I also have asthma, fibermyalgia (fibromyalgia), and cronic neck pain from some other surgery. Please help! Thank you

[advicepleasethx]

Hi deemarieb

I also suffer from sarcoicosis of the lungs and have had surgery on my back for a collapsed c4, i have had Sarcoidosis (Sarcoids) for bout 5 years now, at first after my initial diagnosis i was told i either had Hiv or Non Hodgkins Lymphoma, only after surgery (Mediastinaloscopy) to take a biopsy was i told that i had Sarcoids.

I have them in both lungs at first i was getting extremely short of breath were at some point i would feel as if my lungs were only inflating to half there normal capacity and felt like if i was gasping for air then i would shake a little, but after time realised that most of the time it was a panic attack type reaction, thinking about this disease in my lungs all day and if it was going to end my life made me a nervous wreck, only after i looked it up on the web that i realised that most of people with sarcoids actually recover and the sarcs disappears eventually with no lasting damage was i understanding of this illness and my goal to recover, i carry on as normal and sometimes forget i even have it i sometimes get slightly breathless but my ct lately shows that one of the sarcs granulomas on my left lung had dissappeared, so try to relax yourself more and try to do whatever you did previous to diagnosis maybe not work as thats not relxing and thats what you need relaxing walks out fresh fruit healthy eating, you never know any or all of these could have an effect on your sarcs as there has been no accurate cause of sarcs only known as an autoimmune disease.

I wish you well and hope for a speedy recovery for you

Take care

Matt