Scaroidosis

I have a disease called Sarcoidosis. It was found quite by accident when doctors were investigating the spinal cord injury. I had been having chest pain from time to time and had pneumonia more than most, other than that no obvious symptoms.


"Sarcoidosis is an inflammatory disease that affects multiple organs in the body, but mostly the lungs and lymph glands. In people with sarcoidosis, abnormal masses or nodules (called granulomas) consisting of inflamed tissues form in certain organs of the body."
In my case three lobes of my lungs are permanently affected. It was actually discovered by accident years ago while I was being given every medical test under the sun for my back pain. It doesn't mean I didn't have symptoms, I did. I had occasional vague chest pain, unexplained fatigue and weakness and sometimes shortness of breath. Those are all symptoms one can live with if they have searing nerve pain coming from a spinal cord injury. I knew enough not to complicate the process by adding any other vague symptom to my already weird medical dilemma.
So there I was at emerge once again in severe pain in my side and back; after an X-ray a doctor of internal medicine is called in to see me. I thought we had found the cause of all of my pain, I was wrong. What we had stumbled upon was an autoimmune disease call sarcoidosis. At first I was hopeful thinking we had found what was causing all my symptoms. I soon learned that it was an additional concern for me. Sarcoidosis can be an acute one time occurrence or it can be chronic and from the look of the scarring they knew it might be the latter for me.
The blessing, if you can call it that, was I needed to be followed by an internal medicine doctor. Dr. Finnis became my doctor, and it was he who saw my pain, and kept referring and testing until I was diagnosed with a spinal cord injury. So he was a blessing for me. He wouldn't give up until he had a diagnoses.
As far as the sarcoidosis is concerned I still live with it today. It ebbs and flows. Dr. Finnis has since retired and I am followed by a Pulmonologist in Toronto. I've had a biopsy of my lungs and the damage is great, however my symptoms do not match the level of damage. I am fortunate. I believe the lack of focus on the disease allowed me to push though it, and I was able to say no to the strong medications that are frequently given it treat sarcoidosis. I was only able to do that because there was a much more immediate, serious medical problem I was dealing with.
Studies now show that those who take those medications are no better off then those stubborn fools like me who refused. So for that, I am grateful. This is one autoimmune disease that can be clearly diagnosed with an X-ray so if you have symptoms get the X-ray to rule it out.
There are a lot of symptoms, must of them vague, like night sweats, joint pain, fatigue, weakness, but there are also clear indicators like blood work and chest X-rays as well as catscan that can clearly diagnose this disease.


Like many autoimmune diseases there is little to be done except to manage it. Exercise, a good diet and being followed by a doctor is essential.


I have come to believe that finding scarcoidosis in my case saved me, it brought me to the doctor I needed and the diagnoses that helped stop some of my pain. That's the silver lining!


http://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/dxc-20177970