Sarcoidosis

[crazycougher]

For about 7 to 8 months my husband went to his doctor because of a constant dry cough with a feeling of shortness of breat. The dr did a xray in April, PFT, Stress, tons of blood work, ENT doctor was seen, thyroid, etc. Finally we were told it was in his head, mental. We were not happy with this diagnosis and asked for a catscan. We were sent to a pulmonologist because they found scarring on the lungs and something in the windpipe. Next was to go for a bronchoscopy. All diagnosis' were ruled out and they came up with sarcoidosis All bld work was fine and breathing tests great. Now the treatment is prednisone. Should we get a 2nd opinion? Also can someone with a communicable disease get this or pass it on. Just checking all avenues, the doctor asked us every question possible. Where we vacationed, did we own birds, on and on. Looking for answers. Thanks anyone!!

[1morday]

Second opinions are a personal choice. As for me, I have had Sarcoid for a few years (along with other issues) and have found in my experience that the biospy is conclusive. I am sure you have already been reading. I am only a patient and this is not medical advice but from all I have read (which is plenty), Sarcoid is not transmitted like a cold, it is more genetic condition. No birds, vacations, other people with it, etc. Something just triggers it in your system for which you are predisposed. Sarcoid is hard to diagnois and is either acute or chronic. Acute may go to spontanious remission, while chronc is trougher. I am chronic.

I went through a simular situation as your husband. It took over a year to diagnois and in that time my lungs were damaged. For me, my breathing tests show my air volyume in and out is perfect, however, the dlco values (air exchange actual getting into the blood) were only 33%. Basically, I could take in air but it came back out and not into my lungs.

Predizone is the first normal corse of treatment. As a steroid, it assists in "opening the lungs and helps reduce formation of the granulomas. I have been on and off predizone, as have amy, and also take methotrexate to keep mine in remission. Sarcoid buddies is a great forum with alot of links, information and people that can relate.

Sarcoid is not a great diagnosis but is better than some and the majority of suffers can leave good lives. The hardest thing is sometimes your family and friends do not understand how you can be so sick an not look it. A good informed support system is like a pot of gold. Good luck to you both and God Bless.

[Ron]

Sounds similiar to myself... a chest xray showed enlarged lynph glands and nodules in my lungs. This explained the pea sized very heavy spit coughed up every morning with a dry cough.(so heavy it sinks to the bottom of the toilet). That started the path to diagnosis as sarcoidoisis.

[Lungs]

This is not a communicable disease therefore it cannot be passed to others . However, people like myself who have sarcoidosis need to avoid contact with communicable diseases because generally our immunity is malfunctioning , so we are at more risk for contracting other diseases . Good Luck , it is very frustrating , I know .