Sarcoidosis

On July 26th I finally got my diagnosis. It is Chronic Sarcoidosis. I thought that was something that they made up for the TV show "House".  It's real and I have it. I have probably had it for 25-30 years. It's just really difficult to diagnose. It is called the snowflake disease because it manifests differently in each person it attacks. I have it in all of my lymph system. That is the part of your body that fights infection. So, I get sick a LOT. I think this is my 4th course of antibiotics for the staph infection in my left maxillary sinus (that's in my cheek). That sinus has Sarcoidosis. It has also affected my neurological system. I have Small Fiber Neuropathy, Dysautonomia, and Orthostatic Intolerance. Because of the Dysautonomia I get dehydrated easily, I'm usually light headed and my heart beats faster than it should. The Sarcoidosis is also in my eyes, my joints, my muscles. It is also in my lungs. I have shortness of breath and chest pain. It is in my skin. I am pretty sure that Sarcoidosis is the cause of all of my abdominal surgeries. I will ask them to biopsy the material the next time they are in there cleaning up my abdomen.

The best website I have found for learning about this disease is www.stopsarcoidosis.org. I have actually learned more there than I have from anywhere else, including my doctors.

My treatment options are very limited. Usually the first step is a steroid like Prednisone. Prednisone can cause Diabetes. I am already an uncontrolled Diabetic so that is not a great idea. Then they try immunosuppressant drugs like methotrexate. My immune system is already weak. As I mentioned I am on my 6th month of a staph infection in my sinus. So, for now we just treat symptoms and hope it disappears as mysteriously as it arrived.