Living with Sarcoidosis

My name is Shirley, 52 Female living in New England. I was diagnose with Pulmonary Sarcoidosis 2/8/08. About four years ago, I started to get frequent sinus infections and sometimes my chest would feel very tight, I also have fainting episodes and had to go to the ER - at one time, mt potassium lever was 2.5. but they did lots of test and could not find anything.

About two years ago, i stated having problem swallowing - i did a swallowing test, the x-ray showed there was a problem - the following day, my doctor schedule a MRI - still they did not find anything. Late summer of 2007, my doctor set-up an appointment with a neurologist they did not find anything. My doctor called Aetna and said that they need to approve a CT-Scan - which i did the second week of January 2008 - they gave me the IV and test was done - they asked me to wait awhile i was told to go and do a AEC blood work which shoe the level to be 105. next day, my doctor called and said she made an appointment with the lung specialist. She told me that whatever it is, it’s all over my lungs and we’ll get thru this.

The next day i saw the lung specialist, and four days later i saw the Thoracic Cardiac surgeon Had biopsy first week of Fed 08. I have been on/off steroids and antibiotics as needed about six times since my surgery. i do blood work every two months, x-ray every three months. Things that i don’t understand is - a week after i’m off my meds - yellow mucus and wheezing occur. For the pass four months I have been having on/off pains under my left breast, swelling same side. I did a CT-scan but they did not find anything and i still have the pain and swelling. I have problem sleeping now, still have problem swallowing. Right now I’m at a stand still because no one understand what I’m going thru. I get so tired, burning sensation thru-out my upper torso but my doctor things it hot flashes which i don’t think it is. I had been going thru life changes since i was 39 - and this feeling is totally different.

Today, 1/31/09, my chest is very tight, yellow mucus is coming up. I don’t know if this is related but i have lost all five of my teeth implants. i’m going to an implant center @ Uconn and they way to remove the partials of the implants that have remain but i’m SOOOOOO scared. I try my best to go to work every day - some days it’s hard but i still go. i/m hoping that joining this site - we all can talk about it and one of these days we’ll have a cure. I’m praying for it